Positively Thriving: People living well with HIV
Positively Thriving is a frank and friendly podcast series about
real-life stories of people living well with HIV.
Tom, Robert, Sam and Brad – a panel of positive peers – get together to chat about some of the big topics of HIV including taking control of your wellbeing, becoming your own champion and looking to the future.
With plenty of laughs along the way, the group share their stories, experience and tips to empower and inspire others on their journey – as well as supporting those living with someone who has HIV. Everyone is welcome.
T:[PK1] Hello, and welcome to Positively Thriving, a podcast for people living with HIV by people living with HIV. This podcast is brought to you in partnership with ViiV Healthcare. My name is Tom Hayes, and I’m joined today by three good friends of mine, who are here to share their experiences and insights into life, love, and the future of HIV. This minisode is just a little taster of what’s to come, with three full-length episodes dropping in January, February and March.
R:[PK3] So, I’m Robert… yeah, as you said, I’m Robert Fieldhouse; I’m forty-seven; I’ve been diagnosed fifteen years; I’ve been working in HIV for the last twenty-two years, and I suppose as well as the HIV bug, I’ve got the travel bug; so, I kind of… I don’t like to be in one place for very long; so, I like to keep moving.
B:[PK5] Yeah, I’m Brad; I’m living in North London; as you can hear, I come from America, and living here for thirty years and happen to be living with HIV for thirty years as well. So, very much involved with the beginning of the epidemic and setting up policies and organisations, etcetera, but a little bit like Robert, I also have the travel bug.
B:[PK6] A number of years ago, I saved up enough money that I could travel around the world, backpack around the world by myself, and it was really transformational for me. And it fits in sort of with the theme of Positively Thriving, because I’m planning another round-the-world trip, going in the opposite direction.
S:[PK8] Yeah; hello; my name is Samantha Dawson; I’ve travelled up here today from Bournemouth. I have been living with HIV for thirteen years, and currently the manager of a charity supporting people living with HIV called Body Positive Dorset. And one of my passions is festivals, and my favourite festival is a reggae festival, which is local to Dorset once a year, and weirdly enough, I kind of gear up to it. As soon as it’s finished, I buy my ticket and get ready for the next festival.
T:[PK9] So, as a group, we’ve known each other since 2013; we started doing conferences together, didn’t we? The British HIV Association conference. And when we met each other, I think we were all quite different people. Sam, you were very, very shy.
T:[PK13] I think we’ve all grown; we’ve all started taking on different roles in HIV, and we’ve helped develop content for the LiVLife website as well. And now, you know, after six years, we’re here; we’re recording our podcast to reach people living with HIV, and I mean Sam, if I go to you, who do you want to be listening to this podcast, and what do you want them to get from it?
S:[PK14] I think for me, it’s for people to find a way to be able to live with HIV as just a little small part of them; not something that defines them. You know, there is more to life than just living with HIV; so, it’s finding a way forward for them.
R:[PK16] I think as you’ve just described; you know, HIV for all of us is a journey and we’ve been fortunate, we’ve had that shared journey, but I think, you know, it’s realising every dream that you always had; it’s not letting HIV take your life off track. So, whether that’s you… the family you want, the job you want, the life and career; all those things, I think that’s where people should feel confident now that HIV won’t dissuade them from those paths.
T:[PK17] Completely; I mean I remember when I was diagnosed, and that was only eight years ago; so, I’m a newbie compared to you three, but those are the first questions I had, I think a lot of people have when they’re first diagnosed; what is my future? Will I find love again? Will I have sex again?
T:[PK19] Will I… you know, will I have a career? Will I be able to travel? And I think resources like this, like LiVLife, like other podcasts; it’s just… it’s a wealth of knowledge, I think newly diagnosed people are lacking, and I think it’s really important why we’re here, we’re talking, and we’re thriving with HIV.
T:[PK20] It’s important to show that life doesn’t stop at diagnosis, and you can be your own best advocate; you can be your own best friend, because you need to be for a while, while you’re the only person in the world that knows your diagnosis; that’s and your clinical team. I mean Brad, you’ve been living with HIV the longest out of any of us; what does Positively Thriving mean to you?
B:[PK21] Well when I think of over the past thirty years, how much those of us that were diagnosed early were writing the script for care, for government policies, for everything, and even though we… our entire life was uncertain, so, it was… it was… we weren’t just existing, we were thriving.
B:[PK22] And now with the advent of good treatments, we are still looking to the future, an uncertain future. We still have such an important role to play, particularly when we’re coming up to ageing and you know, the over sixties, whatever; there’s a lot of work to do. And…
B:[PK24] Ah, thank you. I even look… I look even younger after a few drinks and dark lighting.
B:[PK26] So, there’s so much work to do, and you can get down about it, or you can stay positive about it, and know that we’re once again the pioneers in a new field, and we’re laying the groundwork for you young folk.
T:[PK27] So, over the next few months, we’re going to be exploring a range of topics; we’re going to be talking about everything from self-advocacy, to new diagnosis, to having a better conversation of your health care professionals, to menopause, to ageing, to stigma and inclusion. I don’t know if I’ll just go to you, Brad; what are the, maybe two of the topics you’re most looking forward to talking about in this series of podcasts?
B:[PK28] As I’ve already made reference to, it’s about writing the script from now to the future, because within the next ten years, for example in this country, the majority of people who are HIV positive are going to be over fifty. And compared to Australia, compared to the United States, who already have housing systems set up for communities, supportive communities; there really is very little here; so, there’s a lot of work to do.
B:[DJ29] And so, I’m passionate about it, not just for my own self, but you know, making sure that that population of over fifties, particularly the ones who have been living with HIV for a long, long time, and are quite disadvantaged, are made sure to be taken care of by the gay community, by the HIV community, and by the wider community.
B:[DJ31] That’s one, anyway; so, you go on to another one; I’ll think of another one.
S:[DJ35] Okay; so, I think for me, coming from a prevalent but rural area, I think reaching out to more women would be something that I would like to happen from this podcast, because I think for the women living in the sort of Dorset area, the stigma and discrimination makes it even harder for them to access relevant services for fear of obviously, you know, being seen, or you know, any of those type of things; so, I think this for them is something that they can listen to.
S:[DJ36] And you know, I don’t want to bang on about women subjects, but I think the menopause, whilst I’m having a hot flush if the room heats up, boys, I do apologise in advance; that’s what it is, yeah… yeah, so, the menopause, family, children; those type of areas, I think would be really important for me.
R:[DJ38] I guess I’m a great advocate of people being active in their own care, and I think that you know, we’re going to devote a single podcast to that, and I think that’s something that you know, I don’t want to scare people; we’re not expecting people to be experts, but we’re just… I think it’s good for us all as individuals with HIV, to you know, to actually take charge of our own kind of destiny, really, and use it as a wake-up call to really, you know, move towards a place where we’re happy with our care.
R:[DJ39] Secondarily, I think coming up; you know, you’ve got the very nice podcasts between Brad and Brian, and I think that contrast - being with someone who had HIV from birth, compared to a man who acquired HIV as an adult, I think is really going to bring out some of the commonalities, some of the key differences, and I think that you know, HIV affects such disparate groups of people, but I think we’re reminded of the fact that we share more than that which makes us different.
B:[DJ41] I just remembered my second thing, and you reminded me of it. One of the things that I’m passionate… well, very interested in, is working with faith communities, because they were very… interestingly, they were very involved in the beginning of the epidemic; certain people were really heroes in my… in my view, but that has changed so much, and they really haven’t wrapped their head around, or their heart around the issue of the people who are living with HIV as we hoped they would.
B:[DJ42] And so, there’s as… particularly for the over fifties, over sixties, and people needing to go into care, I think there’s a role that faith communities need to play to be open-minded, and compassionate, to be able to help with that journey, and I’d like to help them do that.
T:[DJ43] For me, I think the most exciting topic I’m looking forward to talking about in this coming series, is newly diagnosed people. When I was diagnosed only eight years ago, there was still some support out there provided by existing organisations, for people newly diagnosed.
T:[DJ44] It’s such a pivotal moment in people’s lives, and over the years, we’ve seen that support eroded by funding cuts and changes to services. So, I think if we can offer some sort of service, some support, to let people know that it is okay; you’re not alone; you will find love; you will have sex; you will travel; you will work. If we can do that in some small part, I think we’ve done a great service here.
B:[DJ47] Well I think; well, of course, you can’t see me in this radio, but I’m…
B:[DJ49] Yeah; I’m fantastically youthful.
B:[DJ51] And maybe not so on the outside, but definitely in the way that I think and the way that I… the way that I live. And I really want to send a message that if you have reached a certain age in your life, or in your diagnosis, do not buy into being an old age pensioner or any of the negative terminologies, and that just let the theme… you know, Positively Thriving; I’d like to think I’m a good can… a good example of what it means to positively thrive as a person living with HIV for a long time.
R:[DJ53] I suppose the most important thing for me is that people feel a connectedness with the community, with other people living with HIV, that HIV isn’t an isolator, which you know, sadly historically it used to be, and I don’t think that’s kind of the way it should be moving forwards.
S:[DJ55] I think for me it’s those, you know, the newly diagnosed, no matter how you know, well-educated you are or any of those things; those initial feelings that you get, you know, am I going to die, like you said, will I ever have sex again; all of those things, I think for me, it’s for people not having to deal with that all straight away.
S:[DJ56] You know, remembering that actually, you can take small tiny steps and you know, with great support and peer mentors, you can, you know, find a pathway to become a self-empowered person living with HIV.
T:[DJ57] So, that’s it for today’s minisode. If you like what you’ve heard, the next episode will drop in January, where we’ll be taking a deeper dive into what happens when you’re diagnosed, being your own best advocate, and how to have the best conversations with your health care provider.
A warm welcome
T: Hello, and welcome to Positively Thriving; a podcast for people living with HIV, by people living with HIV. This podcast is brought to you in partnership with ViiV Healthcare. My name is Tom Hayes, and I’m joined today by two good friends of mine, who are here to share their experiences and insights into life, love, and the future of HIV.
T: To my left, I’ve got Robert, and Sam. Robert, if you’d like to introduce yourself?
R: Hi, Tom; I’m Robert Fieldhouse; I’m a… I’ve been a treatments educator for the past two decades, and I write about HIV too.
T: So, you’re bringing us a wealth of… decades of expertise.
R: Yeah, I guess… I was around when the treatments first became available; so, I’ve been a kind of witness to the, you know, the evolutions that have occurred in HIV care.
T: And Sam’s joining us from Bournemouth today.
S: Hiya; yeah, as Tom just said, I’m Samantha, and I’ve just travelled all the way up from Bournemouth; very sort of difficult journey, but the reason I’ve done it, is because advocacy for me is something that’s very important.
S: My own journey of HIV was very difficult at the beginning; I think the first part of my journey is about five years, but within that five years, I’ve found a way to become a self-advocate, and that has led me to becoming the manager of Body Positive, Dorset; the only charity in Bournemouth supporting people living with or affected by HIV, but that role also means I wear many hats; I’m a service user; I’m a peer mentor, manager, trustee... I think that’s about it.
T: That’s a lot of hats.
S: And the cleaner…
T: So; January; how are we all doing? It’s cold; I’m still getting over my Christmas hangover; I have several boxes of chocolates I haven’t opened yet; how are you doing, Sam?
S: Oh, I’m excited, because January is my birthday month; so, fast moving towards my fifty third birthday; I don’t know why I said it like that, but yeah, quite exciting month for me because obviously, it’s very close to Christmas, and at my age, I still complain that my birthday is too close to Christmas.
T: It’s after Christmas.
S: Yeah, it doesn’t matter though, because it’s just been Christmas and then everybody hasn’t got any money left and it’s my birthday; however, I am looking forward to it very much.
T: I’ll buy you a drink after this episode.
S: Ooh, exciting.
T: Robert, what have you been up to this week?
R: I’m not long back from India; I’ve been kind of living in thirty-two degrees heat; so, I’m adjusting to this cold weather, and I’ve been dog rescuing in Goa; so, yeah, a bit of a change now to come… return to HIV.
Standing up for me
T: So, in this episode, we’ll be discussing self-advocacy, becoming your own best advocate, what is treatment literacy, and what does good quality of life mean to us as we age with HIV?
T: So, first of all, I think a good idea to define what we mean by self-advocacy. Myself, I think it’s standing up for yourself in your own care, and that requires a certain amount of knowledge, a certain amount of… a certain amount of confidence as well, because sometimes decisions happen in health care without your own say so.
T: And not everybody wants to be an advocate, but sometimes, you have to be, and I think as patient experts, patient advocates ourselves, I think it’s our job to instil at least a little bit of confidence and courage in that, and the people we support, to stand up for themselves because we can’t always be there for them.
T: I mean Sam; your job is literally being an advocate for almost every person living with HIV in Dorset.
S: Yeah; it feels like that sometimes.
T: That must be so tiring sometimes, but it must be also very rewarding; I know you take great pride in your work.
S: Yeah, I do; I mean you know, that’s the reason why I do what I do, because seeing somebody grow through their journey, or their HIV roller-coaster as I call it, is actually, empowering for me in itself.
S: But when… you know, when you’re talking about self-advocacy, you’re right; not everybody wants to kind of become a fully-fledged activist, or you know, any of those type of things, because sometimes, you just want to be a patient, and I know that because obviously, when I’ve been to a GP appointment for example, I’ve been challenged on my HIV status, and at that point in time, I just wanted to be a patient; don’t want… you know, I didn’t want to be a self-advocate for myself.
S: But luckily for me, my journey has given me the confidence and the power to be able to challenge somebody when, you know, they ask you a question that probably feels like it’s judgemental, or you know, asking you how you got HIV; questions they don’t really need to ask.
T: So, what does your job as a centre manager actually involve, and what do you do on behalf of the patients other than, you know, the admin of running a charity?
S: Well I suppose over the years, it’s been very complicated because Body Positive, you know, as we’ve talked about, you know, on numerous occasions, funding in the HIV community is a massive issue; so, we’ve seen lots of changes. But what we… what we try to do now, is to find a way to empower people, so that you know, they become aware of their own self-care; so, they can access the centre, and find a way of learning to live with HIV, rather than the other way around.
T: That must be very rewarding, though…
S: Yeah, I love doing it and it’s… sometimes, yeah, it gets tiring, but when you see somebody grow, it makes me grow, if that makes sense? So, I feel empowered again because you know, you see somebody taking that journey.
S: And each person is so individual; so, what I always try and remember, is that you know, that roller-coaster for people can occur at different times. You know, some people at the beginning, may kind of cope quite well and you know, a few months down the line, it all goes wrong. So, it’s about also remembering that individuality in who they are; so, that’s something I really try to… support people with, and navigate them through.
T: Robert, you said at the beginning you’ve been working in HIV since 1997; so, that’s when some of the first survivable treatments came onto the market, as it were; what has changed in those twenty-two years since you started supporting people, and how do you find your role has changed as an advocate?
R: I mean, I suppose it’s important to remember that despite effective treatments, that HIV is still a life-changing diagnosis, you know, and I think compared to twenty-odd years ago, HIV back then really did have the ability to take people’s lives off track, and I don’t believe that to be the case today.
R: I think that most people living with HIV can get diagnosed, get the offer of treatment, take that treatment, tolerate that treatment, live well, stay well, and get on with their life. And that… that’s how far we’ve come, is that you know, the fact that we’re talking in very kind of… you know, the fact that we’re talking today about it, you know, there wouldn’t have been something like this twenty years ago.
S: So, I think for me, Robert, as you know, living in, you know, rural Dorset, and I know you’ve been there before; I find that there’s a difference for people trying to become self-advocates in rural areas; an example of that would be a service-user living in Blandford, who on telling her GP that she’s living with HIV, the GP then turned around and said that I need to tell the rest of the surgery because all my staff will be at risk.
R: Wow; those things still happen…
S: Yeah, unfortunately so.
R: Yeah; it’s… I think you’ve… you know, you’ve identified it is a real issue. I think people that live rurally kind of, you know, do experience higher kind of rates of isolation, and are less able to be open about their HIV status. You know, live in communities, which are, you know, perhaps there’s more tittle-tattle and you know, the receptionist tells someone or… and I think you can get lost as someone with HIV in a big city, which is rather fortunate, sometimes. You know, so I think there are… you’re right; there are particular challenges.
Trials, trains and trusting yourself
T: So, if we look to when we were all first diagnosed, what was the one thing that made each of us become an HIV self-advocate? I know it probably wasn’t an immediate change. For me, when I was first diagnosed, there was just the complete lack of information that was given to me.
T: My diagnosis was handled very badly by the clinic; I was actually told over the phone whilst I was on holiday in Grand Canaria; so, I came back and they basically gave me my… my confirmation test and results within about ten minutes of me arriving at the clinic, and I was given a massive paper bag full of leaflets, and shown the door.
T: And you know, that was… it was a really rough one; there was no… there was no support; I was not told to go and see anybody, or to talk to anybody; they just said there’d be a letter in the post in the next few weeks, telling you which hospital to go to, and that was that.
T: So, over the next few weeks, I did what Sam always tells people not to do; I googled HIV to death. I thought there were worse things in the world were going to happen to me, or I thought I was going to die immediately, or you know, no-one ever loved me, etcetera, etcetera.
T: And then it wasn’t until I started reaching out to my HIV positive friends that I knew online, that you know, I started realising that I was over-reacting, and that things were probably going to be okay as long as I engaged in care and I took what my doctor said seriously.
T: But if it wasn’t for that peer support, that informal peer support I had from my HIV positive friends, I’m not sure how much I would have engaged in care; I think my story would have been very different, and I don’t think I would have become an advocate, wanting to, you know, pay it forward, repay the favour that happened to me.
T: Robert, what made you become an HIV advocate?
R: I mean I had been working in HIV for seven years before I was diagnosed, and I just… after you talking about your diagnosis story, I remember the doctor said the HIV test, it’s not good, and I said, what do you mean? Didn’t it work?
R: And she said no, I mean it’s positive; and I said oh, doctor, please, when you give someone a diagnosis, don’t give them your interpretation of whether it’s a good or a bad thing; just deliver the positive result.
R: I changed clinics straight away, and you know… but I think, you know, even despite having lots of information about HIV, there was still a period for me, which lasted a few months, where it was as if, in the gap between every breath, I kept thinking, I’ve got HIV; I’ve got HIV; I’ve got HIV.
R: And you know, for some people, that lasts a long time; others, it… people get over it, and I think the good thing, compared to when I was diagnosed fifteen years ago, is that people are offered therapy pretty much straight away now, and so, therefore the problem is kind of solved, and you know, there’s not time for anxiety. I think that we just kind of get on with it now, which I think is the right approach.
T: Sam, I know I’ve heard your story a couple of times, and it never… the train bit never fails to make me laugh, but so, tell me about your diagnosis; tell me about the train journey, and why you became an HIV advocate.
S: So, yeah; obviously, my… I was diagnosed nearly thirteen years ago, and to be fair, at Bournemouth Clinic, they are really good. One of the health advisors actually came with me to my mum and dad’s house to talk to them; so, that was quite nice.
S: The only… yeah like you just said, Robert, about being educated and stuff like that. I knew stuff about HIV, but it… that initial thought was, I’m going to die, and all of those things, and then I got told I was a slow progressor; so, I actually thought I was just dying slower than everybody else.
S: So, I think I hid for about three months under a duvet and just cried a lot. But I was referred to Body Positive Dorset, and that’s where, you know, my journey began. And my train story is that we had a support worker, who booked me on a women’s weekend in London, and sort of took me to the train station, and she knew, obviously, how severe my anxiety was and still is, to be fair, because I’ve got a general anxiety disorder diagnosis from the shock of being diagnoses HIV positive.
S: So, there we are at the train station, and I’m, you know, not going to get on and you know, all those type of things, and she knew me really well, this support worker; so, she waited for the train to… you know, that last few seconds for the door to shut, kicked me on the train; the doors shut, and that was it; I was London-bound.
S: So, that was, you know, a massive turning point; I walked into a room full of women living with HIV from all over the world; women with children; women with jobs; just so many different women living with HIV, and that was my massive turning-point.
S: And then I turned that negative into a positive, came back to Bournemouth with a totally different spin on my HIV, and started working towards becoming an advocate and obviously, the manager of Body Positive now because that was one of my goals.
T: So, you’ve gone from a service user to a service manager?
S: Yeah, and I love it.
T: So, still on the topic of self-advocacy and being newly diagnosed; I mean Sam, you work with new diagnosed people all the time; I deal more with people online; what would be the one piece of advice you would give to somebody who was newly diagnosed that would put them on the path to being involved in their own care? Why should somebody be involved in their own HIV care? Why shouldn’t they just take a back seat and let the doctors do it for them?
S: Because, you know, self-care is so important with whatever condition you’re, you know, you’re living with in life, whether it’s HIV or you know, any other condition you want to name. We need to be able to take some sort of responsibility for our self-care.
S: But what I try to say to people at the beginning, is you know, we are all individual; I’m not expecting people to take great leaps of mankind; it’s finding out what works for that individual person. Yes, we all have a common theme; we’re living with HIV, but how we move forward is just so… you know, slightly different.
S: I know you already said about Dr. Google, and obviously, that is one of my, you know, favourite things; don’t go off and Dr. Google. I also talk about leaflet overload, you know, when you see somebody come in with a satchel full of leaflets; so, I try to say let’s leave the leaflets aside for now, and just find a way of, you know, even just talking and working forwards.
S: And one thing I always do when someone comes to the centre on their first appointment, is give them a hug, because that means so much to somebody. You know, you see… you could almost see everything, almost like I can’t think of the word…
T: Being lifted.
S: Yeah, just, their shoulders lift, or you know, maybe they felt like they would never be touched again; so, just being able to give someone that human touch, being a human person, and letting them see that actually, you know, like someone like me can be living with HIV; it kind of makes them feel a little bit more relaxed I supposed, would probably be… I don’t know if that’s the right word, but relaxed.
T: Sounds amazing; I wish I had had something like that when I was diagnosed…
S: Yeah, I wish you had too, to be honest.
T: Robert, you’ve worked in treatment literacy for a while now; as an author, as someone… you’re a journalist in HIV; what would be your number one tip to somebody who wants to be more involved in their own care; why should they, and how should they?
R: Thinking about newly diagnosed people, I suppose the first thing is don’t miss appointments. And thinking about this, I actually missed a hospital appointment yesterday; so, I’m not very good at taking my own advice.
R: You know, don’t miss appointments; understand the tests that you’re having; you know, there’s only four or five tests that you need to… you need to understand, and I don’t think things… I wouldn’t want to over-complicate things for people; just as Sam said.
R: I don’t think people should necessarily have to become treatment experts, but I think it’s important that people know what treatment they’re taking, what treatments are on offer to them; what sort of effects those treatments are going to have; it’s important to know you know, who you can ask.
R: I think the biggest hurdle for people starting off, is simply not knowing the questions to ask; you know…
S: Yeah; sorry, Robert, but no question is stupid either; that’s what I say to people.
Owning the conversation
T: No, I agree and I think that comes onto our next section, really; how to have the best conversations with your clinic, and with your health care professionals? Because I think a lot of people will go to their clinic; they will see their doctor two, three, four times a year, and they will nod and smile and go home with the pills they’re given and…
T: And for a lot of people that is fine, and if that’s how they want to handle their care, good for them. But for a lot of people, they will smile and nod, and they will want to ask questions; they will want to know more, but they won’t know how to ask that.
T: And I think we’re all bamboozled by a lot of terms that people might not understand; terms like viral loads, CD-4; just terms like undetectable. A lot of people we’ve talked to about U=U, which is this amazing advancement in HIV; someone who’s undetectable, on treatment, can’t pass HIV on sexually.
T: People are being told they’re undetectable, but the doctors and the nurses, and pharmacists aren’t explaining what undetectable actually means in practice. So, it’s… how do we bridge the gap between what the doctors… the language the doctors are using, and improving sort of patient understanding of that language? Is it more resources? Is it things like this podcast? Is it more peer support?
S: Yeah; I think, you know, obviously, clinics all work very differently, don’t they? So, you know, that kind of… you know, obviously, having a good dialect… dialogue… dialect… dialogue with your health care professional is brilliant, but if you’re in a clinic where it’s a lot smaller, or you know, appointment times are even less, you just need to find another avenue of you know, support, and that could be, you know, an organisation like what I work for, some clinics have peer mentors, and you know, peer mentoring is amazing.
T: I know a lot of clinics have started using volunteers from perhaps Positively UK’s Project 100; I know the Bloomsbury clinic actually pays its peer navigators a salary, which is incredible. I know not all clinics are lucky enough, looking at Bournemouth in the room here.
T: But, I don’t think it can be over-valued, you know… the value of peer support, having somebody in the clinic that is… might not look like you, but they’re going through the same journey as you. They still had the same news; probably not delivered in exactly the same way, same place, but they probably felt the same things you’re feeling and they’ve moved past and to a point where they’re now able to help people.
R: I suppose the reality is, is that the clinic is the one place that we all have to go;
R: So, therefore, you’ve got to… you’ve got to see the clinic as really the backbone of our care, and you’ve got to find the right person within that clinic to help you make… you know, if you don’t get on with the doctor, change the doctor, you know, try and, you know, build a good relationship with the nurses.
T: I think one of the best things that any of us can do for our own health and mental health, is to be open and honest with our clinic team, and I think only by telling them everything that’s going on in our life that’s relevant to our care, can they actually give us the best care. If they don’t know something’s wrong, they can’t help.
T: Not long after I was diagnosed and put on treatment, I was really struggling with my adherence, because I didn’t like the pills I was on; they were giving me horrible effects. Because I wasn’t telling them what was going on, they just saw my numbers, my viral load, my CD-4, and said everything’s fine, and shooed me out the door.
T: And you know, I got steadily worse and worse and worse, to the point where I wasn’t taking my medication because I didn’t want to take my medication because it made me feel awful. But then, you know, it took a peer advocate at my clinic to tell me that if you don’t tell people, they can’t help you.
T: And by having that open, frank dialogue, and telling my doctor I wasn’t taking my medication, which you know, was a scary step; it’s like disappointing a teacher or something; sorry, I’ve not been taking the pills you gave me, but they make me feel like crap. Only by saying that did they start talking about, you know, changing me to a different medication, which had less side effects, which mean I could take it.
T: Sam, you deal with the clinics as a patient and as a peer advocate; is it always easy to be open and honest with your clinic?
S: No, I think you’ve just hit the nail right on the head, and that’s the problem, isn’t it? Because most of the time, I’m presenting as a peer mentor, and I’m, you know, speaking up for somebody that I’m with, or you know, whatever way I’m providing that advocacy. But then when it’s my appointment, I get asked all those same questions, but I’ve kind of got this part of me where I just say yeah, everything’s fine; it’s really hard to let go.
S: So, actually, in my last appointment, I was kind of struggling with you know; my consultant always says who motivates the motivator? And I was really feeling it that day in the appointment, and I did actually break down and cry, which for me, is always really, really difficult.
S: And the funny thing was; well, I suppose it’s not actually funny, but he didn’t have any tissues in the room; so, he got the receptionist to bring some tissues in, but he was trying to do it really secretly, but then when I went out, everybody knew I had been crying. So, as caring as he was trying to be, it was like then everybody was like they knew I was kind of struggling and everyone was like giving me tissues and did I want a cup of tea, and did I need to sit down?
S: And that might sound as if it’s nothing, but actually, it’s massive because if I don’t tell them how I’m feeling; how can I continue to be, you know, the advocate and the stuff that I do? And it is really important; you do need to speak to your consultant, whether you are the peer mentor of the, you know, of the clinic; you have to remember that you’re a patient still; you know, don’t cut off how you’re feeling and only concentrate on who you’re supporting.
S: You know, in your appointment, it’s your time, your appointment. So, share what you’re going through, you know, what you’re suffering. And at that point, it was just low mood, not tablet problems or anything like that…
T: But it just built up.
S: Yeah; just built up, you know, anxiety; I’ve been through a very challenging time through my life recently, and probably didn’t reach out to the networks of support that I probably could have done. So, you know, for me, it’s not having that brick wall of like I’m fine; just being honest and being a patient, and sharing that with, you know, with my HIV consultant, because that’s who I see mainly.
S: And there is no time limit on my appointment; that’s what I need to remember. Because he knows that I do what I do, he doesn’t kind of give me a seven-minute appointment. I get a little bit longer, just to explain how I’m feeling. So, it’s using that time and explaining it, rather than trying to be that brave soldier and everything’s all good.
T: And bring your own tissues.
S: Yeah; maybe that would be a better idea, because actually, everybody knew afterwards; so, yeah, you’re right; take a packet.
T: I once had a breakdown in a clinic appointment when I had just broken up with my long-term boyfriend, and my doctor didn’t have any tissues either; he gave me some of the bed roll… it was very glamourous. Robert, how is your relationship at your clinic? Do you feel able to be open and honest with your questions and your concerns?
R: I think over time, you learn to be; you know, I think you know, most HIV doctors know that forty percent of their waiting-room are depressed; so, they’re not necessarily going to ask you. So, and it’s a truism that the people that shout the loudest get what they want.
R: So, you know, you kind of… you have to develop those skills in order to make sure that you’re on the best treatment, to make sure that you know, everything that you want covered, is covered. And that’s not… you don’t have to be militant to do that, but I think you’ve just got to be organised and you’ve got to remember that that’s your time, as you said, Sam, where you really do need to invest the… you know, invest in whatever will make you make that… you need to invest in whatever will make that appointment kind of appropriate for you and get the most out of it.
R: We only see the doctors, what, twice a year now; so, you really can’t afford to throw that opportunity away.
T: I think you’re right; I think that a lot of people think that the appointment is for the doctors; an appointment is for us; it’s for our health; it’s our care, and you do have a say in your care; you don’t have to take what the doctors say. If it’s not what is working for you; you do have that right to a second opinion, to change treatment; there are so many different treatments out there, but none of that happens if you just sit idly by and let it happen to you.
S: I think that’s something that you learn over time; like you said, Robert, because I think when you’re newly diagnosed, obviously your consultant to you is the font of all knowledge. And it’s only with time and meeting peers and you know, meeting other people living with HIV that actually, you realise that you have got the ability to challenge your HIV consultant or health care professional, if you need to.
T: And I think that’s why it’s so vital that we have people like you, Robert, and Sam, and Angelina and Brad and Brian, standing up for our peers.
R: And I think, you know, we’ve come a long way to actually… to realise that what was a dream maybe ten years ago, to have people living with HIV in clinics.
S: Yeah, I’d just like to add onto that, because it’s actually quite exciting. I will be the first peer mentor at Royal Bournemouth Hospital Sexual Health Clinic, just working on it now. So, because that’s something that they have been lacking in; so, yeah, I’m looking forward to that quite… and I get a hospital volunteer badge; I’m very excited about that.
S: I know; I love a badge.
T: Do you get a coffee allowance?
S: I think so, yeah; ooh, the exciting this is I get a car parking permit.
T: That’s like gold dust in the NHS.
S: I know, that is like gold dust, but like Robert just said, you know, having a peer in the clinic just makes it more real, more human, and you know, you see people in sexual health clinics; they don’t even look at each other; they’re all on their phones, and, but you know, kind of having a normal person there; well, I don’t know what the word normal means, but anyway, having a person there, is, I would say, half the battle, and a brilliant place to start.
T: I think so; especially when HIV care has changed so much, and in the last five, ten years, you know, as we’ve moved from waiting for people’s CD-4 counts to drop with treatment; now it’s test and treat. You know, people can be on treatment within a week of receiving their HIV diagnosis.
T: I mean how are people dealing with that, Sam; you know, you’ve been supporting people a while now; are people handling immediate treatment well? Is it something that we need more support around adherence and starting treatment?
S: I think, you know, there’s always going to be a percentage of anybody’s cohort that will need support around, you know, medication adherence, and you know, kind of finding a regime that works for them. But I’m part of the cohort that, you know, depending on what the CD-4 count was, that you didn’t start medication straight away.
S: So, I did five years of living with HIV before I started medication, and my experience of that is that it’s almost like being re-diagnosed. And you know, I have spoken to other people about that and they’ve shared that very similar experience.
S: So, I think, you know, treatment right at the beginning, and you know, obviously, treatment is protection as well, is better because you know, rather than working with somebody for so long and getting them into a good place, and then them having to start tablets; you kind of end up going back to the beginning again, and then you’ve got to go all through you know, all of this stuff again; all of those new feelings, you know, the newly diagnosed feelings; they come back.
S: So, I think it’s actually easier for people starting medication straight away, and it’s an easier base for me to work with because we can straight away look at you know, techniques that work for them, whether that be, you know, when they need to take their medication, whether they need a dosette box; you know, all of those little different tips that we all use to support people.
T: I am on the one pill a day, and I still use a dosette box, because my memory is so bad. I bought one that’s… today; it’s rainbow, and you press buttons and the doors pop open; I think it’s just to make me use it because it’s like a little gadget, but…
S: I got really excited then about that; I was like all my days, I want that dosette box.
T: I’ll send you a link.
S: Okay, brilliant.
Living our best lives
T: Robert; when we’ve been talking over the years, you’ve mentioned supporting people bringing bags and bags of pills to you, and you know, you had to sort them for them, help them understand what… you know, how many pills were people on when you started supporting them?
R: Oh, people could be on upwards twenty tablets a day, and people would take three times a day medicine. And obviously, sometimes with food restrictions or fasting, or taking with certain foods; so, the advent of simplification; the advent of more tolerable, simpler therapies, has been a real [revelation] in HIV care; you know, compared to what I used to see.
T: Obviously, the main benefit of our amazing treatment we’ve got these days, is we live longer, and we have a better quality of life. But with that, it means we live longer; so, we’ve got more issues when we grow old; I mean, we should be thankful that we’re growing old, obviously, but it means we’re now starting to talk about what good related… what good health-related quality of life means to us as individuals.
T: And I think clinics are starting to ask people to define what they see as good health, so that we can, you know, monitor it. I mean for me, my good quality of life would be just being able to live a daily life without really thinking about my HIV, other than taking my pill at eight-thirty each evening.
T: I want to be able to travel without taking masses of pills; I want to be able to take it maybe two hours later, or two hours earlier without worrying about whether I’ve messed things up. I want to be able to drink and eat whatever I like, without it. I suppose that what I’m saying is, I want to kind of forget I’ve got HIV apart from that one pill.
T: Sam, what would you… if you had to say a goal for good quality of life yourself, what would it be?
S: I suppose that’s slightly different for me, because I… you know, I’m in an age bracket where I’m… you know, I’m in my fifties; so, I’m a woman who went through a premature menopause; so, I’ve, you know, picked up, I suppose, comorbidities along the way.
T: So, what do comorbidities mean for people, sorry, that are listening that might not know what a comorbidity is?
S: Oh, okay; so, comorbidities would be other conditions that are either, what’s the word, accelerated, you know, because of living with HIV, or the fact that I think the way I understand it, is that because I’m living with HIV and I’m ageing with HIV, that there might be something I would have got on later on in life anyway, but just living with HIV has kind of brought them on a little bit earlier.
S: Also a little bit of theory of that, you know, that five years without medication; that’s why I think obviously, medication is also really, really important. So, for me, it’s just finding a way, like you said; HIV is just a tiny little bit of me; I take my tablets; that’s all done and dusted, but because of my other conditions, I have to take other medication.
S: So, I think that the biggest thing for me, is finding a way where my general anxiety actually doesn’t cause, you know, too much hassle within my quality of life. So, just finding techniques that I can, you know, get that to not control, or disrupt any quality of life that I have.
T: What about you, Robert; what would you define as a goal for good quality of life for yourself?
R: I mean, I agree with you, Sam; I think a major hurdle for most people living with HIV is anxiety and depression, and mental health issues that don’t get kind of picked up in the clinic. I suppose, you know, I would want someone to have the best life possible with HIV, to you know, be… live a healthy life, exercise, stop smoking, like be on the right treatment for them. Really kind of you know, don’t let HIV become a hurdle in any way, shape or form.
R: So, you know, like I’ve probably said before; have that family that you want; get that job that you want; you know, make plans for your future; you know, those are the simple things. You know, treatments are freely available to everybody in the UK, and it… you know, pretty much works for… similarly for everybody; so, it’s a guarantee that if you take your treatment, you’re going to stay well.
R: By staying well, you know, people won’t recognise you as being HIV positive; so, you can kind of just get on with your life.
Shaking off the stigma
T: It’s an interesting point you made there; people being able to recognise you as having HIV, and I think that’s a lot of… a lot of people have that concern when they’re first diagnosed. Immediately, it’s oh my god, people will be able to tell I’ve got HIV, because they’re thinking of the horrible side effects from the early treatments, like lipodystrophy.
T: But it’s really not an issue, is it, for people who are diagnosed today, who go on modern treatment; no-one will ever know from looking at you that you have HIV. But that feeds into stigma and self-stigma, doesn’t it?
R: Yeah, absolutely.
T: I think as soon as we’re diagnosed, it’s an automatic, unconscious reaction to stigmatise ourselves. We don’t know that’s what we’re doing, but we’re stigmatising ourselves; it’s my fault; I brought this on myself; I was a slut, or I wasn’t careful enough; I deserve this.
T: And none of that is true, but it’s a… I don’t why it’s not a coping mechanism; it’s some sort of self-destruction mechanism, but it’s something I think most people do when they’re first diagnosed, and if you… that self stigma builds up if you don’t challenge it and you don’t examine it; it’s very easy to then let other people stigmatise you.
T: I mean I’ve seen so many different types of stigma over my eight years of HIV, from being at the GP’s surgery where I saw my manila folder had HIV scrawled on it in red sharpie on the reception desk, through to being rejected on apps like Grinder and Scruff.
T: And initially, I told some of my family members, and they did not take it well and they didn’t want to talk to me, and you know, should I touch their baby? And then you know, I educated myself and I educated them, and it’s been fine since then, but stigma is still very pervasive in 2019 for people living with HIV.
T: Sam; you live in Bournemouth and you quite often talk about the stigma in rural areas; I mean you told me that awful tale about when you were helping out educating at an older care centre.
S: Oh, yeah; yeah, care centres are… I do education in lots of different settings, but obviously, you know, as we’ve talked about ageing with HIV, you know, we’re kind of having to go into care centres now because we had a patient living in a care home, and the only thing they were interested in, was how he got HIV.
S: And that had nothing to do with anything, but obviously, that also altered the way that they really cared for him; the way they handled him. You know, it’s almost, it’s those old kind of like eighty visions, isn’t it, of this… someone coming out in like a space suit and boots, and, I don’t know what they think was going to happen.
S: But that… it actually, it’s such a shame, because even still to this day, you know, when I… other education I do, say, with nurses for example, you know, some of the stories you still hear from them about they’re taught to double-glove, and wear a mask if they’re, you know, doing bloods on somebody living with HIV.
S: You know, maybe it is a rural-centric type problem, but I think what… all it is, is you know, what we’ve talked about; just a little bit of self-education; you’re not… you know, we’re not asking everybody to learn everything about HIV, but if people upskilled themselves and brought their knowledge into, you know, being up to date, you know, maybe there wouldn’t be so much stigma.
S: And the self-stigma thing, I can totally relate to that, just for a moment, because you know, when I was first diagnosed, and I’ve got grandchildren, I wouldn’t let my grandchildren share my drink at first, even though I knew they wouldn’t catch anything from my drink. But it’s being able to talk about that and share that with somebody because you know, you could be sharing that with somebody when you know, somebody’s newly diagnosed, and you could be telling them that kind of story, and they might be thinking, oh my goodness; I’ve just done that… and you’re right, if we can kind of curtail the self-stigma at the beginning, perhaps people would be able to move on, you know, more positively.
T: If you pardon the pun.
S: Yeah, more positively in their journey.
T: Robert, you’ve been living with HIV for how many years, now?
R: About fifteen, seventeen.
T: And you’ve been working in HIV for twenty-two years; how have you seen the stigma change over those times? I mean shamefully, I’m thirty-four, and I’ve only been living with HIV for eight years, and I’ve only really been aware of HIV for eight years.
R: I suppose you know, the biggest scientific advance that we’ve had in recent years, is the knowledge that we now can share, that someone that’s on treatment, who’s undetectable, won’t pass HIV on to their sexual partners, and that’s…
T: That’s amazing.
R: You know, that’s something that really should absolutely change the way that people living with HIV feel about themselves, because you know, what we need to remember is, people feel crap about themselves because it’s the fear of contagion; it’s I’m going to be a risk to somebody else.
R: And I think now that people start treatment pretty much immediately, and become undetectable, you know, then they’re not a risk to their sexual partners, and really, this really should now start to change the way that as a community, we feel about ourselves and you know, the way… you know, it should bolster our self-esteem.
R: But it’s… you know, certainly a powerful message, I think.
T: And I think the advent of Prep along with U=U, I mean just people are chatting about HIV more; just having things like U=U on a Grinder profile, or having Prep in the prevention section; it just opens the conversation that… it makes people feel less afraid. I mean is U=U being discussed in the straight dating world, Sam?
S: Well actually, I did an education session yesterday with a group of adults, and some knew the message; some didn’t, but by the end, you know, of the session, everybody knew what it was, and actually, you can see people change. And I know that sounds really silly, but whatever you know, these are people not living with HIV; they’re people just trying to upskill themselves.
S: So, I think having people, you know, like us, for example, or being… having the chance to do this, you know, gives us another area of being able to empower people even further, and like you said earlier, that feeling of not being a risk to society, is oh, so empowering.
T: I still remember the day I got told I was undetectable; it just felt incredible; I just… I did cry, I think; I just… it just feels like you’re no longer… it sounds weird, but it sounds like… it feels a bit like you’re some sort of murderer, or something lurking around all your friends and your sexual partners, and then to have that sort of lifted off your shoulder, and not feel like you’re going to give somebody the curse…
S: It’s like being showered in cleanliness.
Not scary anymore
T: It’s a shame my friend Angelina isn’t here, because language, I think is very important when talking about U=U. I think U=U is a very catchy message, but the language Undetectable equals Untransmittable, A, is a mouthful to say, and B, it’s quite clinical. Undetectable requires you to understand what undetectability is, and viral load, and untransmittable is a very sort of clinical word as well.
T: I know some campaigns have used Can’t Pass it On, but the language we use is so important, especially when talking to the general public. Have you found in your centre, Sam, people’s understanding of U=U; have you had to kind of sit people down and explain it? Have you had to walk them through?
S: Yeah, pretty much, because like you just said, it’s that undetectable; so, you kind of have to explain you know, why are they undetectable; so, it’s kind of, you know, explaining about the medication and good adherence, you know, and it being asleep, or whichever way you know, you like to coin the phrase.
S: And again, untransmittable; it’s like you say, it’s just, you know, if you’ve got a mouthful of… what’s the word; something, gobstoppers; yeah, it makes you feel like you’ve got to talk like that. But I don’t know what other words I’d really use, you know, as opposed to untransmittable and undetectable and all of that, but I think what I do is you know, if they say what is that? I just try and find a way of explaining to that person.
S: One of my ways [is] working is I always individualise how I’m delivering that message; so, for some people, they might like a more medical explanation; you know, so, talking about how the medication is keeping them undetectable, and how obviously then, you know, the virus doesn’t get passed forward.
S: You know, and there’s obviously thing that you know, you can’t say in a podcast, but you know, when you’re working with certain people, there’s words you can use that explain it in quite a fun way as well.
T: I always say tried and tested.
S: Exactly; yeah, that’s a good… I like that one, actually, tried and tested. That is really good. But it’s an important message.
T: Robert, as a health writer, and a very good health writer that’s been writing about HIV for many years; how did you personally feel when the first news around U=U; so, perhaps the Swiss statement 2008 came out? How did it feel to you as a health writer and someone living with HIV?
R: Well crikey; I think, it was a long time coming. I think that we knew since the mid nineties that a woman on fully suppressive HIV treatment wouldn’t pass HIV to her baby; so, therefore, you know, it should kind of potentially conflate that people who are undetectable aren’t sexually transmissible.
R: I think the Swiss really put their heads above the parapet and then that rather brave statement they made, which was kind of suppressed by many organisations for a long time, you know, did lead to the studies that then ensued, that you know, took thousands of couples and showed no, you know, linked transmission kind of events.
R: And I think that you know, so… personally, you know, I think we’ve waited a very long time for this, and I think it’s every single one of us needs to do whatever we can to get this message out there, because I think it’s the one thing that can really challenge the stigma around HIV.
T: I think we are seeing that; I think we’re… over the last few years, I’ve definitely seen less stigmatising language on things like Facebook and Twitter and Grinder, about HIV. As people have realised, we’re not the bogeyman anymore.
Good life goals
T: So, as we’re living longer with HIV, and we can’t pass it on and we’re starting families and planning for the future, what does ageing well mean with HIV for all of us? I know Sam, you’re still in your early menopause and your very elegant early fifties; you are radiating heat today.
S: Yeah, sorry guys.
T: How do you define ageing well for yourself at the moment, and what do you see as ageing well for you in the future?
S: So, I live in Bournemouth; I love walking on the beach, especially in the winter, because there’s no grockles there, if anybody knows what grockles are, but you know, you can email me about that one. Yeah, so, there’s no grockles; so, it’s just… yeah, walking on the beach in the winter, just being out, fresh air; all of these things that help me age well in a nice, healthy way; although I will say I can’t get up in the mornings; I have achey bones.
T: I think a lot of people are probably googling what a grockle is right now…
S: Yeah, probably; something else to think about, hey?
T: I mean I’m thirty-four at the moment, and I’ve had HIV for eight years. And I’m just about thinking about planning for my future and ageing with HIV. I mean the idea of, you know, pensions and possibly care homes and everything still terrifies the bejesus out of me.
T: But I was at a conference recently, and a friend of mine, who’s an HIV physiotherapist, Darren Brown; he’s excellent; hello, Darren; he looked at me getting out of a chair using both my arms, and he said “Tom, at thirty-four, you should really be able to get out of a chair without that much noise or using your arms.”
T: So, he sent me a message on Facebook a couple of days later saying, your challenge is to get out of the chair every day this week without using your arms. And you know, as funny and devastating as that comment was, it has made me think about actually, I’ve not been looking after myself and keeping myself in as good a condition as I probably should be, if I want to be healthy and happy and not in pain in my seventies and eighties.
T: Because you know, if… all things going well and medication going well, I probably will make it to my eighties. Yeah; since then, you know, I’ve paid more attention to eating healthily, you know, when it’s not Christmas, to exercising more; I started walking the dog everywhere; I’ve been doing 5K with the dog every day up the hill, and it’s just little things like that, that have made me feel so much better as well.
T: It’s just simple things, like walking a dog every morning, getting out of the house, getting fresh air, doing the exercise, and it makes me… it makes it so much easier for me to concentrate on my day and get things done.
T: But it’s not until you… you notice that possibly you’re not… you’re not living your healthiest, best life, that you start taking action. I mean Robert, you’re in your early forties?
R: No, I’m nearly fifty.
T: Oh, get off; why don’t you have any wrinkles?
R: Oh, I do’ it’s just good lighting.
T: So, in your mid-forties, you’re looking to the future; what is good quality of life for you; what is ageing well for you? What are your goals?
R: I suppose what I want to avoid is kind of, you know, becoming frail too quickly. So, like you said, you know, get your body moving, you know, exercise a bit, lose some weight; don’t smoke. You know, live a kind of full life and stay engaged, stay connected with you know, both my HIV peers and my friends, and not become isolated.
R: I think, you know, the one thing I think that a lot of us are fearful of as we age, is that we’re going to become more and more isolated. And you know for me personally, HIV has brought me connection; it hasn’t isolated me; I’m very fortunate in that, and I know it’s not the same for everybody.
T: I think having a community is so important, not just to living well with HIV, but ageing well with HIV. I run a [Geomaphase] Positive Pub Crawl in London, and it… some of those people that come to our pub crawl; the twenty people there are the only people in the world that know they have HIV.
T: And they come and that is the one time, every two months, they talk to other people living with HIV; and it’s a life line to them.
T: And it does make me sad, and that you know, they’ve got to his point in their sixties or seventies, and that that’s where they’re at, and they’re happy with that, but I can’t convey the amount of relief and positivity that comes with sharing your HIV status with somebody.
T: I know, again, our lovely friend Angelina couldn’t be here today; she hates the word disclosure.
S: Ooh, indeed she does.
T: What did she say? There’s no good “dis” words.
S: No, apart from disco.
T: Apart from disco; there’s like disclosure is bad; it’s a legal term; you’ve got dissonance, discord; the only good one is disco. We say sharing, or telling people your status. But just if you feel comfortable, opening up and telling somebody, someone you trust, obviously, your status, can have such a positive effect on your mental health, on your social life.
T: And I think it’s something that people, especially with the newly-diagnosed with struggle; it’s who do I tell, how will this affect my life; you know, will they share it? But I think that would be my one piece of advice for… for new diagnosed, for mental health, for lack of isolation, just share your status.
T: I mean possibly not quite as dramatically as I did on… I was trying to tell my best friend; we were in Sidewalk in Birmingham, a gay bar, and I kept trying to tell him my HIV status, and the music was so loud I kept shouting it louder and louder. And he couldn’t hear me. And then I shouted it at the top of my lungs, just as the music stopped, and everybody in the bar stopped and stared.
T: And luckily, no-one cared. But it was, you know, once we went outside and we talked through it, and he was upset and then he was fine once I explained everything to him; it was just such a weight… I wasn’t carrying that secret anymore, and I think just having people around you that know what you’re going through, as you go through life, is just a wonderful thing.
R: I think people’s responses are often you know, more positive than one would anticipate, you know, nine times out of ten. So, I think yeah; just put your head above the parapet and give it a try, but obviously, I think it’s up to the individual at what sort of pace they go telling people.
S: Yeah, I think mine; I, we talked about, the awful train journey that I got trapped on; that was mine. When I came back from that weekend, I came out on social media for want of a better word; maybe not the best sort of place to, you know, tell somebody your HIV status, but it was something that I, you know, promised to do at the end of that weekend, and I did it.
S: And you’re right, Tom; there is, you know, there is no looking back; you know, obviously, depending on how or where you need to tell somebody your status, or you know, how you share it; it makes a hell of a difference to your journey, I think. You know, just being able to, even if you just tell one person.
S: So, if you can’t tell your family or your workplace, or your… you know, whoever it is, when you’re newly diagnosed; you know, if you can share that with a peer mentor, that’s even half the battle, I think, because you do; you see… it’s just seeing the weight come off of somebody’s shoulders when they’ve just been able to say those words, you know, and not get a horrible response.
Tips and tricks
T: So, as we come to the end of our podcast
T: Let’s think about advice, tips, tricks, resources. Firstly, newly diagnosed people; what would be your one piece of advice or a resource you’d send people to if they’re newly diagnosed; what would be their starting point, Sam?
S: Ooh; you came to me first. I think I would probably say you can’t stop people going online and looking at things; so, for me, I try to give them sites that I know that are, you know, pretty helpful. i-Base is a good site; obviously, now, obviously with livlife.com, you know, I’m always trying to get people to travel to that site, especially because there’s people talking, and they can kind of choose what applies to them, and it just makes it more real again.
T: And you’re on there.
T: And you’re on there.
S: And I’m on there as well; although I often tell them not to watch me, because as we all know, when I’m being filmed, I have this really bad habit of nodding my head and saying mmm at the end of it. I really don’t know why I do that.
S: Any other tips? I suppose for me, it would be, remember your rights as a human being; so, you have your own rights to discuss your way forward; become a person living with HIV and you know, not the other way around.
T: I like that.
S: Yeah; that’s always a good one. Medical for me, would be keep your appointments, take your medications; no question is silly; that’s always really important to remember. And if you’re really forgetful like me, writing things down is a really good tip.
T: Okay; thank you; Robert; for newly diagnosed people, some advice, some tips, some resources you’d recommend?
R: I suppose, you know, it’s important that people know the options that are open to them if they’re about to start therapy. So… and understand the difference between those combinations, the relative benefits of each. That can be a process that takes some time; maybe use the nurses, use the… You mentioned HIV i-Base Sam; so, the i-Base phone line, where you can phone up and get, you know, advice from a peer, someone living with HIV about starting treatment.
R: Talk to people that have taken it, and I think, you know, often the… the advent of starting is far less remarkable than people anticipate. You know, I think people don’t get kind of weird and wonderful side effects by and large; and of course, you’ll stay well, you’ll feel well.
T: I suppose for me, I would say, take an interest in your care. I don’t want… I don’t expect you to become a patient expert like us in this room, but just being interested in your care, and asking questions occasionally, will really improve your outcomes, your quality of life, and I think, your satisfaction with your treatment.
T: Just mentioning things like perhaps you work on a night shift; will vastly change the medication they offer you because it will be more appropriate. If you don’t know what a CD-4 or a viral load is, ask them; ask them to explain it to you.
T: And like Sam says, I’m [very forgot] I mentioned my dosette box earlier; write your questions down. If you have any issues between your appointments, make a little note in a notepad, or on notes on your phone; so, next time you can go in and you can go okay, there’s this, this, and this. But if you don’t ask, you don’t say, they can’t help you.
T: So, that’s it for today’s episode. The next episode will drop in February, [or] we’ll be looking at individual experiences; what do we have in common? What experiences make our journeys unique? And we’ll be talking faith, HIV, and ageing in our communities. So, be sure to watch out for the next episode on Spotify, Sound Cloud, Livlife.com, or YouTube.
A warm welcome
T: [OJ2] My name is Tom Hayes; I have been living with HIV for nine years this year, and I work for the HIV charity, Saving Lives. Today I am joined by two good friends of mine, who are here to share their experiences and insights into life, love, and the future with HIV.
B2:[OJ6] Hi; I’m Brad. I’ve been living in London for thirty years, and living with HIV for thirty years, and I am a proud resident of Camden in North London. I’m involved in a lot of community associations within Camden, but have also… I have worked in the HIV field in terms of support centres, Peer Support with Positively UK, and yeah, that’s about it.
B2:[OJ8] For me, Positively Thriving; well, as you heard, as I’ve just said, thirty years ago, when I was diagnosed, there was no hope if you were diagnosed back in the 1980s, or early ‘90s, and fast-forward thirty years, I’m still here, but I wasn’t supposed to be here; so, I have learned a lot in that journey.
B2:[OJ9] The tools that I have learned in that journey about self-advocacy and taking care of myself, and managing treatments, managing co… co-morbidities, as difficult as that journey is, it’s just given me the skills to live life very successfully, and prepare for the future very successfully; so, I am thriving.
B1:[OJ11] Positively Thriving for me is a balance between resilience and a whole lot of empathy. And in terms of like… and just getting better; stronger, every time. We’re just incrementally getting better than we were before.
Seeing things differently
T:[OJ12] I think resilience and empathy are, you know, key themes going to come out across today’s conversation. I mean this episode, we’re going to be discussing Brad and Bryan’s contrasting experiences of life with HIV, how that shaped who they are, and what they do now. Whilst both my guests have had HIV for a very similar amount of time, Bryan was born with HIV, whilst Brad acquired HIV later in life.
B1: [OJ14] Yes, that is correct. So, I found out I had HIV at age eleven. I was diagnosed at age two, ’94. So, when I was told, it was recently after the passing of my mum; like Mum passed in January ’04; February ’04, they were like right; you’ve got HIV. They dressed it up as if they would for an eleven year old; just basically chalked it up to just say right, is it going to affect me?
B1: [OJ15] Because at first, I thought it was like diabetes; it turns out it was nothing like it; I was like I can still eat fast food; I can still run around and play; I don’t have to worry about any of that; I don’t have to give up doughnuts. I was like right; sick, let’s get on with it.
B1:[OJ16] Looking back as a man, to when I was eleven, I’m so glad I had that response to it; I’m so glad I was told then. So, in retrospect, to being told any later, when I had already formed my identity. So, I was still in a state of flux; so, HIV was one of those things that was laid as one of my foundations, if that makes sense?
B1: [OJ19] Oh, thank goodness; oh, my days, yes. Purely because one, one, I was told; two, the exposure to the community from an early age; so, being exposed obviously to positive peers, and given the option for Peer Support, like at a younger age; it’s… like cemented a lot of things in my identity that I’m like… I’m in debt… well, in debt… I’m grateful for, yeah.
T:[OJ20] And Brad, yours is a very different story; you were diagnosed at thirty-six years old, in 1990, at the peak of the original epidemic; how did the news change your life then, and how do you feel about your status thirty years on?
B2:[OJ21] Well, yes; it was the peak of the epidemic, but it was also a peak in my life in terms of my career, and my confidence, and my relationships, and so… and that all just came to a shuddering stop in terms of, well… forward planning. And so, I could only do short-term planning, and even though we hear Bryan say that HIV is just a part of him… just a part of us, the… one of the biggest things that we had to confront, was unfortunately the world didn’t feel the same way.
B2:[OJ22] And so, HIV was a stigma that we had to deal with, and a lot was put on our shoulders at that time, needing to deal with our friends, our families, with the authorities, with the systems that were not prepared; with our Faith communities in particular. So, it was a huge, huge challenge at a time when I personally, was having to, you know, feel like that I had one foot in the grave, and that it was just a matter of time that I was going to die; a matter of… short time that I was going to die.
B2:[OJ24] Oh, thank you.
B2:[OJ26] Well… you go into survival mode, and of course, things were much, much different then and there was a groundswell of activism and people addressing what was a crisis, and so, there was actually an energy of looking to see what can be done and sharing of information and much more caring for people that were in the same… same boat.
B2:[OJ27] So, a lot of us who were very ill, were having to care for people that were even more ill than us, and it was just taking it a day at a time, or a month at a time, or a year at a time, and burying people, and figuring out systems, and figuring out how to cheat the systems if we had to. And… but fast-forward thirty years, and you’ve learned a lot of skills during that time.
B2:[OJ28] You learned a lot of how to face challenges, and how to overcome challenges. And so, looking back, I say not only am I a survivor, I’m a pretty good survivor, and I’m thriving on my experience.
It’s a family affair
B1:[OJ30] So, listen; within the African community, they don’t like talking about anything; anything remotely real, or anything that doesn’t keep in line with like, that isn’t in line with keeping up appearances, is just like nope; nope; not going to do that; no, we’re not going to talk about it.
B1: [OJ31] There are members of my family that are living with HIV that I didn’t know about until… yeah, Christmas. Until Christmas; I recently found out there are people living in my family that have HIV that I didn’t know about.
B1:[OJ1] One was in hospital, and I was kind of like so, you’ve told me as if it’s like a piece of gossip, but what are we going to do about it as a family? Are we going to visit; are we going to do this; are we going to do that, or is it just an elephant in the room?
B1:[OJ40] Exactly; exactly. So, there’s… there’s the issue there and nobody wants to have those conversations. So, let’s say, for instance, I would want to find out how my parents got it, or how… how it came to pass, does it make sense? I want us to be able to have those conversations, so, we’d be able to have that level of transparency. As much as it may hurt, I want that level of like… I’ll pour out if you pour out and then we can be together; we can heal together, rather than them just be like no, we don’t talk about it.
B1: [OJ41] So, for me, the main part is obviously, reconciliation; so, I try and combat the stigma within my household by being open about my status, but not vocally saying it, because the thing with the African community; they switch off when you start preaching, which is about things that they don’t want to hear, which is ironic; it’s incredibly ironic.
B1: [OJ42] Yeah; so, but for me personally, to tackle stigma, the way I can do it is one, if they want to talk about it, keep putting non-verbal gestures or communications like there’s my meds. Ah, nephew, can you just pass me my meds real quick? Take my meds in front of them, or do… start talking about HIV in front of them. I’m going to conference to do X, Y, and Z; yeah, to raise awareness for this, da-da-da; I’m going to camp, da-da-da; oh, what’s that camp for? Oh, funny that you should ask; ha-ha-ha.
B1: [OJ43] It’s… it’s an ongoing battle, like it’s an ongoing battle because you’re talking to people that necessarily want everything to be okay, but they don’t want to put in the legwork for things to be okay; and that’s the community that I’m currently living in, and it’s difficult, especially obviously, everything intersects. If you break yourself down into like a person, I want all my communities to harmoniously like intertwine. Obviously, that’s…
B1: [OJ45] It’s a nice… yeah; it’s a nice dream. It is seemingly far-fetched, but that’s my goal. I want us to be able to all break bread together; I want it to be like… I don’t want to marry someone where, if I did have a big win, I’m not inviting you guys; you know what I mean? You guys are family to me; I don’t want there to be any kind of… obviously, I would anyway; like, she wouldn’t be my wife, if that makes sense? Does that make sense?
B2:[OJ55] Well, one of the things that Bryan said was it’s an ongoing battle, and I’m afraid, thirty years from now, it’s going to be still an ongoing battle, but it’s… it changes with time. It maybe matures with time; at least you get to know who the players are with time.
B2:[OJ56] So, just as in the beginning, I had a sense of who… by thirty-six, I knew the people that I could trust, whether they were… they were blood family, or friends, you know, family or friends as well. In terms of my family, it was very obvious who… to me, who was going to be unquestionably supportive, and not freak out.
B2:[OJ57] I’d like to think that the good part of it is my sister tells me that there are sometimes very passionate conversations that are going on behind my back. And so, that there’s… you know, it’s all part of that education between my families; having arguments about… about homosexuality, having arguments or discussions about HIV.
B2:[OJ58] At one point, my sister says it was almost they were drawing straws who would end up taking care of me. Having to flip… flip a coin to see who had ended up with me, when I was in my… my final stages.
B2:[OJ60] Kind of, yeah; yes. So, but I still strongly believe that as my family is ageing, some of them are mellowing; And I think a lot of it, also has to do with every time that we come together, I just am glowing; I’m happy. I’m doing something, and living in London.
B2:[OJ63] Yeah; the younger ones, by the way; the nieces and nephews; I’m very, very confident that’s not going to be a problem, because they’re clued up; they’re clued up, and they’re much more open-minded. And so…
Keeping the faith
T:[OJ66] Brad, you’ve been involved in your Faith community as a salvationist for many years now; as an LGBT person myself, like a lot of us, I’ve never really felt welcomed by organised religion, and then HIV adds a whole new other layer to that; how have you reconciled, and how has your church, your community, reconciled you being a member of the community and a gay man, and someone living with HIV?
B2:[OJ67] Oh well, it isn’t reconciled; that is still an ongoing relationship. And I’m… come from a fifth generation Salvation Army; so, my ancestors were founded the actual church itself, and so, I was really, very, very involved with it. But having said that, and although I left the fold when I… when I came out to myself that I was gay, they were… that was the first port I went to when I was in crisis.
B2:[OJ68] And so, I went back to my Faith, my family of Faith here, which was the Salvation Army, and fortunately that there were some people within the Salvation Army, who recognised what the needs were, and I think took literally and practically, the message from their Christian Faith about care, and about addressing need, without judgement.
T:[OJ70] I think that’s a conversation many churches and organisations are having still today. Bryan, despite growing up in the church, you’ve only recently come back to Faith; what happened there; why have you come back to Faith, and how is your Faith community dealing with HIV, and how accepting are they?
B1:[OJ71] In regards to when I shifted away from Faith, is more because one, I was raised in church; so, with my mother being positive, it was a case of where she passed they year I was diagnosed; so… the year I was told, I should say. So, it was… that relationship we had, she had with God, she was very orthodox and she loved god all the way up until the end, but that, I believe, had an impact on her adherence, where she believed that there was going to just be this divine intervention where in place of medication.
B1: [OJ72] So, for me, kind of… yeah, it was… I was… I wasn’t disappointed; I was just angry, because what’s the point? Do you know what I mean? I didn’t… I didn’t understand it; obviously, we don’t see things from God’s comprehension, because I mean what was in it? But I kind of couldn’t like come to reconciliation with that, only until later on in life.
B1: [OJ73] Obviously, Brad, you are an incredible survivor; obviously, hearing stories like… and everyone’s stories from that era was just… it’s admirable and it’s honourable to the point where again, I had layered HIV as a part of myself, whereas you were a fully-fledged man and you… you… your life was rocked. A lot of people wouldn’t have gotten back up from that; so, to have God in that time, it must have been invaluable, and to have the Faith community turn their back on you, just due to your sexual orientation, is crazy.
B2:[OJ75] In case of the LGBT community, I have horror stories; people, you know, coming to me, telling me how they’ve been treated by the… by the church, pastors that have like called the wife of someone… someone within the council of the privacy of confession, saying that they were HIV positive, or they’re bisexual, and before they get home, the pastor has called the wife to warn… to warn them; things like that; horrible, horrible things.
B2:[OJ76] And then in these communities of Faith that have encouraged people to go off treatment, which ended up in their death, and not taking responsibility for that, and not even having a discussion reflecting on, is this the best way to care for our people?
T:[OJ77] That’s a very interesting point; over the years, we’ve seen religion and modern medicine clash. Time and time again, we’ve seen stories in the press about people being persuaded by their Faith groups to come off modern effective treatment, and perhaps… pray the illness away, or use something like a blessed beetroot juice, I think, was one of the latest ones. And this is something you’ve seen in your church; how… and how would you tackle it if you saw it?
B2: [OJ78] Not in my church per se; I think… and there’s so many denominations and there are so many sources of the belief systems within all these different denominations; so, some of them will take the… what you have said; take the line that you can pray… pray the illness away, but others look at the medicine as a gift from God through the intelligence of man; this is how we take care of ourselves.
B1:[OJ79] Again, just echoing what you’re saying, Brad, in regards to… everything you’ve said in regards to God blessed us with the faculty of discernment; we’re able to discern what we need and what’s a blessing from him.
B1:[OJ80] In terms of dealing with stigma; in terms of dealing with the care of the LGBT community… yeah… the community… it’s a case of where… they need to do better, especially with the new wave of believers; they need to do better in terms of tackling stigma, tackling homophobia, and being more… yeah, teaching…
B1: [OJ83] Yeah; yeah, teaching the truth and love; it’s more to say that despite any grievances, despite any biases, despite any whatever you… despite any hatred that you have, you need to pray about that. You need to come to…
Your Peers are Here
T:[OJ86] One thing that religion gives us, I think, is a sense of community, and community comes in many different forms, including Peer Support. I mean you’ve both worked in Peer Support over the years in various roles; Brad, for Project 100, and Bryan for CHIVA Children’s HIV Association, and Barnardo’s; how did you get to the point that you were able to engage in that Peer Support and then how did you go from that to working in Peer Support? I mean if we go to Bryan first…
B1: [OJ87] With my Peer Support journey, I’ve been again very privileged; very privileged to have been, like have my hand held through every walk of… every walk of life in regards to supporting my HIV journey. Like there’s not been one instance where I’ve felt abandoned.
B1:[OJ88] And having the resilience was only just fortified more so; so, in having Peer Support, let’s say with Barnardo’s, they started me off in terms of my sexual health, and obviously, there was a point where I was sexually maturing between like eleven and like thirteen… thirteen, fourteen. So, ages eleven, twelve, they were… they were like just giving me the bare basics, the bare bones, the general knowledge that the general public should know; they don’t, but… that’s tea for another time.
B1:[OJ89] Then it obviously transitioned into them prepping me in terms of minor things, like HIV and the law, but on a… on a very basic level, and then it… then ushered me on to CHIVA, Children’s HIV Association, where there’s residentials for young people living with HIV and they taught me more in-depth in terms of HIV and travel, HIV and the law, my… our rights; what we can and can’t do; what about protection; in terms of like criminal cases; how to speak to people; how to speak to our negative partners, if we have them; how to handle our health care; what treatment literacy?
B1: [OJ90] It was important, because they all led… led me to a point where I could essentially now support or act as a point of support, because I had already tackled the self-stigma, and I had already tackled the… any adherence issues that I may have had growing up. And they enabled me with the faculties to, you know, navigate Peer Support whilst I was still being supported.
B1: [OJ91] So, say for instance, at camp, because I had been part of the community for so long, it would be a case of where they’d deliver the workshops for like… facilitate whatever workshop they need to facilitate for the young people, they would then ask me to infiltrate, so to speak, not snitch, but infiltrate in terms of what the general consensus is.
B1:[OJ94] Yeah, marinating, and just like in their minds, like you know, like being taken in, and what they were doing with that information; were they discussing it? So, it was more I’d go infiltrate amongst my peers; facilitate conversations, impromptu ones. So, what are you guys thinking about language; how would you feel about talking to somebody about your status; do you know what I mean? Like what would you do; are you going to tell your partner?
B1: [OJ95] And it’s facilitating those conversations that have enabled me to do it later on in life, whereas now, at my hospital, people lost the follow-up from like Paediatric to Adult Services; it’s a case of where… they get me on the blower, like Bryan, could you… could you catch up with so-and-so, because they need… we haven’t heard from them, but I wanted to know… and I’ve seen them on Instagram; they’re on Instagram; they’re on Facebook; I was like, but I saw you online on Facebook; why aren’t you answering the nurse’s call, etcetera, etcetera.
B1: [OJ96] But I won’t… for some people, I can come in with that kind of energy; like, hey, what are you playing at? Other people I have to be like hey, let’s meet up; I haven’t seen you in ages; do-do-do-do-do; but really…
T:[OJ99] And Brad; you’re coming at Peer Support from a different angle; you’ve been trained as part of Project 100, once you’re already well into your HIV journey; how did you find the journey becoming a Project 100 peer mentor, and how has it helped you?
B2:[OJ100] Oh, yeah; tremendously. Well, I would say the… what came before that was the work that I did with other people living with HIV, of course, was at a time that there was an international crisis, or here, it was a national crisis, and it was focused in London and happened to be focused in… Camden was the second highest concentration in the nation.
B2:[OJ101] It was always… it seemed like it was crisis intervention all the time, and what we were setting up were… were real critical support services for people, really basic needs stuff as well, like food, and welfare support, and mediation, etcetera.
B2: [OJ102] and then I connected with Positively UK… and, which was a one-on-one, very supported and limited one-on-one support system that was quite unique, quite different than sort of the shot-gun approach that we were… that I was having to deal with, you know, and going to people’s homes and helping them with a funeral, and you know, when the phone picked up, you didn’t know what was on the end.
B2: [OJ103] And it was… what I discovered was, and I went there very humbly, wanting to do something; wanting to be of help to someone, and I didn’t realise how much help I could be to them, just because of all the crap I had been through, and all the stuff I had lived through, and so, it made me feel even better about the project, and even better about myself.
B2:[OJ104] And I think that the feedback that I got through Positively UK, is that the people that I was… had the honour of being their Peer Support, found it very, very useful, and were very appreciative.
T:[OJ107] I mean I have been doing most of my Peer Support online these days; I started off chaperoning in [HIV] in Birmingham, and I really found that very rewarding. But it’s… it just reminded me how very different all of our journeys are, that I was the only person doing this for a long time, and I was being asked to support young gay men like myself, straight men, women who were in their sixties, who had complete different journeys from me.
T:[OJ108] And the only thing we had in common was we all had HIV. And that is a common thread, but it’s not quite enough sometimes to strike up that relationship, that accord, and you know, be able to have a heart-to-heart conversation with another person; so, I found it quite difficult. Whereas now I’ve moved to London and I work for different charities remotely, I do a lot of online Peer Support, and I somehow feel that barriers are a lot lower online; people I think, rely a lot less on the look of the person you’re talking to when you’re talking online.
T:[OJ109] So, I’m able to have more… more open and honest conversations with people; people open up a lot more online than they do in person, because they don’t have that embarrassment factor, I don’t think.
B2:[OJ110] That’s really interesting, and I absolutely can understand that, because I can remember in the day, when they were looking for someone to be a speaker, say, for the Black churches, or for… for heterosexual groups, I would be asked, and I said yeah, but you know, Johnny over here, or Bill over here; they can do it as well, and they said we’d prefer you because you look heterosexual.
B2:[OJ115] No, I’m talking about people’s perceptions, and so, they perceive, whether it’s because… I don’t know, because I was an American, or whatever, and at the time, I looked different than I do now, but they didn’t… people didn’t perceive that I was gay… at the time. And so, they said we would rather send you because of all the homophobia that we know that this group has a history of. You could probably sneak in there, if you butch it up a bit; you could probably pass as a heterosexual person, just to get the message across, and that was the point.
T:[OJ129] Before we move on to health care, I think it would be really helpful if we could think of maybe one thing to say to somebody who’s listening to this at home… and they’re feeling isolated. Perhaps they haven’t got a Peer Support organisation to go to; what one piece of advice would you give them; what can they do to help themselves feel less isolated living with HIV? Brad; do you mind if I come to you first?
B2:[OJ130] Okay; so, presupposing that I’m talking to someone who has been recently diagnosed and they’re over fifty, and I’m going to say that I’m talking to that cohort, man or woman, that I can tell you that the news is more good than it is bad, and that if you’ve been diagnosed within the last couple of years or so, you’re in such a better place than myself, or someone like myself who was diagnosed decades ago.
B2: [OJ131] Because you’ve got the skills in place; you hopefully have a good network in place. The treatments now are so fine-tuned, that you’re not going to have to go through a minefield of… and taking dodgy things, or untested things, and the treatments are so much more advanced.
B2:[OJ132] And I’m telling you this, you out there, who’s newly diagnosed, that these are your advantages; the knowledge that you have available to you is so much… and now with the, you know, the internet, it’s right there at hand and you can do your own research; you can be a good advocate if you’re having to grapple with a general practitioner that isn’t as clued up on HIV as he or she should be; you can start being an expert in it and feel confident to be an expert in it.
B2:[OJ133] And you also have more visibility of people; well, you have our voices at least, if you could see our pictures, that we’re brave enough or confident enough to tell you our story, and that should give you confidence enough to know that there are other people out here who are doing great, who are thriving, and you can be too.
B1:[OJ135] The one piece of advice I would give you, is speak to your clinician; speak to your local Peer Support if there is one, and come and find us; either through the Children’s HIV Association, or through a clinic. Obviously, there’s George House Trust; yeah…
B1:[OJ136] And it’s not saying that… if you’re newly diagnosed, fair enough; I get it, you want to isolate yourself, and you want to… you may want to feel alone, but you’re not; like, we’re here, and we’re all right, you know; like we’re actually all right; like we’re quite funny, to be honest with you.
B1: [OJ137] And once you’ve gotten past that grieving stage of finding out that you’re HIV positive and you’re in a position where you think right, let’s see what life’s like on the other side; we’re here; that’s the one piece of advice I can say.
B1:[OJ138] Like the option… you don’t have to, but the option is always here, to talk about it unfiltered, to laugh about it, to cry about it some more; laugh some more again. And then yeah, that’s it; we’re about.
Moving Your Health On
T:[OJ141] So, moving on; like Peer Support, health care services also need to differ and adapt to the people that they’re serving. Bryan; I know obviously because you were born with HIV, you’ve come up through Paediatric Services, and you’re now in mainstream Adult Care; how did the services differ and was there any support in the transition between Paediatric Care and Adult Care?
B1:[OJ142] Yes, okay; so, I’ll answer that… the difference between like mainstream Adult Care and Paediatric Care, there’s differences, but let me… I’ll talk briefly about the transition. So, the transition for me personally; fortunately, I was in like a well-developed city; so, it was… it wasn’t like the raw towns, because I feel sorry for those guys; they probably just went oh, you’re of age; we’ll chuck you in Adult Care.
B1: [OJ143] I don’t know how you guys did it; you guys are really resilient, but yeah; I mean my hand, again, like just to reiterate before; my hand was held through a lot of processes, and I got to stay in Paediatrics for as long as physically possible, until like they were like you actually have facial hair and you’re in the room with like ten year olds; you need to…
B1:[OJ145] You… can you please exit; can you please go and be with the adults now? And I was like oh, fine then. I think the main differences are the treatment… the treatment like in terms of one-to-one when they’re asking you questions; it… I don’t want to say… I’m not sending any shots, but it kind of feels like in Adult care you feel like you’re on a conveyor belt, where we’re ticking through a list.
B1: [OJ146] Maybe it’s my specific clinic and I’m okay, if that makes sense; I’m okay in a sense where my treatment’s okay; my adherence is okay; but they’re like going through a checklist, just to like okay, good; good; good; are you good here, good?
B1: [OJ148] Yeah; relate to that; I think with Paediatric Care it’s more like hey, are you all right? How’s your… like the tone… hey, are you okay? No, no; are you really okay? And you even get the third are you okay? In Adult Care, it’s like you all right? Ah, cool… oh my days, bloodwork; blood work in Adult… mainstream Adult Care is the ghetto. Oh, my word; oh, my word; it is like the worst…
B1:[OJ149] Like okay; just to explain it; you get gold star service in Paediatrics; they’re like okay, do you want me to put on the spray for you? I’m like, yes, please. I’m like yes, please, put on the spray; obviously for anybody that doesn’t know what spray is, like it’s a… kind of like a… like a numbing spray.
B2:[OJ152] Do you get a lolly afterwards?
B1: [OJ155] Listen, adults are like being treated like bums out here; it’s crazy; it sucks. They were like okay, Bryan, you’re good. Are you still seeing anybody? Ah, wait, there were notes for it in 2016; thank you for reminding me that I broke up with my ex four years ago, doctor, but all right. And then they send me… send me downstairs; recently, they sent me downstairs to do bloodwork with like the… the negatives; the normies.
B1: [OJ156] But I was just like this is the worst; I was like you’re sending me to go do bloods; can you not just send one of the nurses in to take… to strap me up in a… you know, do your thing? Yeah, no; they sent me downstairs to do normal bloodwork and I was devastated. The nurse was like… like the speed at which she took my blood.
B1: [OJ160] She could have bought me a drink; I was like what is this? This is the worst. I was there like this holding my arm; I was like… I didn’t even get a sticker; sorry, a plaster; I didn’t even get a plaster; it was kind of like cotton wool and…
B1: [OJ164] That’s the… that is the ghetto; what I was like; do you know who I am?
B1: [OJ168] This is where activism needs to ramp up; come on.
T:[OJ173] So, Brad; obviously, you’ve been engaged in HIV care for thirty years now, entirely in Adult Services; how have you seen things change over those thirty years? Have things got better, things got worse? How do you feel your care has changed?
B2:[OJ174] Fortunately for me, I was put on the conveyor belt right into gold star service right in the beginning. So, one of the premier hospitals here in London, and in a way, I’ve been… I just can’t fault them; I feel a bit spoiled. I have my consultant I’ve known for twenty-five, twenty-six, twenty-seven years, and we have like almost a friendship relationship at this point; I don’t know what I’m going to do if he retires, when he retires, I should say.
B2:[OJ175] But having said that, there was a change then in delivery of service, where some of our services then had to go to the general practitioner, my local general practitioner. And it was like going back twenty years, because then it became me trying to educate people that don’t have a high caseload of HIV positive people, and really having to be sharp with knowing what they were doing.
B2:[OJ176] And one of the things that I do, if I’m dealing with someone who I’m not familiar with, I just in a friendly way say so, how many HIV positive patients do you have… or do you have? And that can at least give me a sense of how much they know. Or ask them if they’ve read a particular article; oh, have you seen this new article from BHIVA, you know, and if they don’t know what BHIVA stands for, then I know I’m having a problem, and I have run into situations like that.
B2:[OJ177] So, I’m still with the GPs, even my local GP, still sort of ongoing process of educating them and keeping them skilled up for my sake. Now I’ve told you the gold star service; the GP service; the new service that I have just graduated into, is the Ageing clinic. And this is something…
B2:[OJ179] Yeah, I know; they call it SAGE; they always have cutesy names for these clinics. And at once, I… at first, I resisted it because of my own self-ageism, I suppose, but I find it quite fascinating, and really grateful; they’re taking… already monitoring me for all those things that we expect to possibly see changes in our body after sixty-five; bones, blood, neurology, and so, I feel I’m getting an MOT every six months around not just specifically about ageing, but ageing with HIV; so, I feel pretty confident about that.
B2:[OJ180] Having said that, I also know once again, I’m a guinea pig, because the data they’re taking from me in this… because the clinic is new; so, we’re the first patients that are coming into this clinic, and so, we’re going to be making… so, that it’s going to be gold star service by the time you two guys get to be my age.
T:[OJ183] Thank you for your service. I’ve… so, I’ve only been living with HIV nine years this year, but even in that amount of time, I’ve seen HIV changes… HIV services change quite dramatically. When I was first diagnosed, like the clinic would do anything for you; it was… they would prescribe medications that were not perhaps to do with your HIV, but they were sort of you know, associated with… they would refer you to other departments within the hospital.
T:[OJ184] And over the last few years, obviously as Primary care and Secondary care have changed, and who pays for what has changed, it’s impossible to get anything out of your HIV clinic, other than your monitoring and your meds, which on the surface, should be fine, if GPs, and not all GPs, some GPs are wonderful, but my GP knew what on earth they were talking about when it came to HIV.
T:[OJ185] So, I go to them with a minor complaint; oh, I don’t want to prescribe you this medication because it might interact with your HIV medication; so, I whip out the Liverpool iChart app and go no, it’s fine; it’s [all waste]. I still no, you have to go back to your HIV clinic; so, then I’ll go to the HIV clinic, which I’ll wait two weeks to see, and they’ll go no, of course it’s nothing to do with your HIV; you know that, Tom. And I say I know that, but it’s not what my GP said; and then they’ll pass me back to my GP clinic, which will take another two weeks, and by that point, you know, whatever it is has either fallen off or sorted itself out. But it’s just frustrating.
B2: [OJ186] Yeah, but more than that, it’s… it’s dangerous too; that’s what bothers me, because I’ve had the opposite situation where I’m going to my GP and they’re recommending something that I know fully well is not good for me, and I have to… but I have to go to my doctor to get them to talk to them, to correct it, and I worry about people who haven’t… don’t… are not as self-aware about their treatments, which is always wise; very, very good not to just take everything for granted, but actually, do a little bit of research, do a little bit of study.
T:[OJ187] And that’s one of the first things I tell people when I’m supporting them, is download the HIV iChart app to your phone; put it in a hidden folder if you must, but just know your treatment, and anything the doctor prescribes you, anything you buy over the counter, check it on the app just to be safe. It is invaluable. Sorry, Bryan…
Keeping the relationship alive
B1: [OJ196] To be honest with you, with the infrequency that I’m having to go, it’s like once every six months, it’s a case where I would see whoever’s available; so, it’s a case of where… my actual clinician; she’s just a force of nature; she’s just in, out; she’s at this conference, she’s at here, there, everywhere; so, I saw her the last time I was there; she was like oh, hiya; it’s been ages; how are you? How’s the family? Do you have kids yet? I was like… I was kind of like what? What? What? Yeah, no; she’s banging; I love her to bits, but I see her very… like the relationship’s breaking down; she needs to do better.
T:[OJ197] Do you feel confident having any conversation with her, if you had something that you really need to discuss; are there boundaries you feel like you wouldn’t be able to discuss, maybe something sexual health wise, or relationship-wise, or…?
B1:[OJ201] I’ll say I need the… so, her trainee; like her stand-in, one random guy; I can’t remember what his name is, but he was saying oh, are you okay, da-da-da; I was like yeah, yeah, but what if… my antiretrovirals are having an impact on my erections; what would you do then? What are we going to do? I just like throwing curve balls like that at them. And he was like, but is it? Da-da-da… and I was like no, I’m kidding. Ah, I love things like that.
B1: [OJ205] Do you get what I mean? I’m just like… do you know what I mean, I just need to… I need to like… they need to be grilled a little bit; they need some fire underneath them; they can’t just be running around thinking yeah, it’s a conveyor belt; no.
T:[OJ206] I came from Birmingham where I was similar; I saw whichever doctor was available, and the majority of them were all right, but it’s very difficult to build up a… a working relationship if you see a different doctor each time and you need to go two times a year; so, you might not see the same doctor ever again. But the nurses always stay consistent, I find, which is… which is a helpful touchpoint.
T:[OJ207] I mean having recently moved to London, and doing what I do for work in HIV, you know, I knew exactly who I wanted for a HIV doctor, and I picked her like straight away… I said… I just DM-ed her on Twitter and said I want to come to your clinic; will you see me? And she said yes, pop in on Monday and register with us.
T:[OJ208] So, that’s nice, and you know, I’ve set up this relationship with her and, you know, hopefully, because she’s relatively young, I have the same sort of situation you’ve got with your doctor, and we can sort of stick together for the next few decades. But it’s… even then, it’s taking a while to completely be open and transparent and honest.
T:[OJ209] With my first doctor, I had such trouble admitting to my bad adherence; I mean it wasn’t wilfully bad adherence, it’s just I have shocking short-term memory and I didn’t want to feel like I had let them down, or I had, you know, I had upset the teacher by not taking my medication. So, but yeah, I’m getting there and it takes a while to build up an open and honest conversation with somebody you only see twice a year.
Into the future
T:[OJ210] So, we’ve gone from relationships to health care teams, to treatment; what treatment do we want for the future for ourselves? You know, Bryan, you’re… we’re all ageing with HIV in one way or another; Bryan, you’ve had HIV since birth; so, you’ve aged with it for a good while into being a young adult…
T:[OJ214] And Brad, you’ve had HIV for thirty years, which has taken you into your sixties; so, do we have different concerns about the impact the treatment is having on our body and our minds as we age at different stages in our lives? I mean Bryan?
B1:[OJ217] Memory, joints; just general ageing things, but… the whole obviously discussion around it like accelerating or being obviously more detrimental for people living with HIV. I’m just worried about all the kind of familial ailments that like affect like my other family members. So, I went around and I said, so, guys; what have you got? Who’s got what? Paternal, maternal; what’s going on, guys? I need a… I need a rap sheet, because this is obviously over in Africa, and everybody just very like… I don’t even know if they’ve got any like actual records anywhere; so, I’m just… I’ve had to go around…
B1: [OJ219] Yeah, a survey monkey putting into a spreadsheet, and everybody was like to me, but no-one cares; why are you doing all this? And I was like you don’t care now, but you will care. So, I was kind of OTT with it. I think another thing is… mental… like mentally, my mental health. Like I… I know we say a lot about one, the treatments, and two, any side effects to the treatments we feel perpetuate anything I’ve not dealt with, or anything resurfacing.
B1: [OJ220] So, I’m trying to like tackle any issues that I may have like buried to say, you know… you know when you say you’re okay; it’s the age old British thing… yes, I’m fine, thank you; it’s I want to actually be okay; so, nothing creeps up later on in life where I’m just like snap one day and I’m like, I actually can’t do this.
B1:[OJ224] No, no; I refuse; I rebuke it; come on; I’m trying to XP up; so, when we get to level thirty, that means we’re dun-dun… yo, already; already; we’re powering up, guys. That’s what… Brad, look at you.
B2:[OJ225] But you’re right to do that; you’re absolutely right to do that, and keeping that up; that’s the trick. Keeping that up. And I think in a way, we as HIV positive people, have an advantage because we have, as I think you said once, hyper-awareness of our body, and our… taking care of ourselves; so, that gives us an advantage.
B2:[OJ228] Yeah, and so, that means that we’re tweaking the systems for you, and experiencing them, and there is a huge concern in that in that because only now, they’re gathering the data, and what effect… because none of us were expected to be alive now, but now that we’re alive, they’re trying to figure out what thirty years of drugs, thirty years of chronic infection, have done to us.
B2:[OJ229] And so far, what they’re saying, or they’re certainly telling me, is that you can expect the same longevity, the same longevity and the same rate of ageing, but at an accentuated ageing; not an accelerated one; we won’t get older faster, but you’ve already, you know, highlighted it; there may be some systems that will be affected more on us, like our bones, like our memory; the things that you’ve talked about.
T:[OJ234] Bryan, as a young person who has been on HIV treatment since a young child, now at the age of twenty-seven; what are your hopes and dreams for the future of HIV treatment? You’ve got many years ahead of you.
B1: [OJ237] Realistically speaking, aside from the fact that I want gold star care, educate our GPs; goodness gravy. If you’re going to push… push them as like the main primary care, oh, my word; like you want people to go and have themselves checked out, or the young people to check themselves out; please, just like make it…
B2:[OJ244] But it’s the things… it’s basically the things that I’ve been talking about; it’s the… managing HIV is complicated enough; managing it with… while you’re ageing, it becomes even more complicated, with the comorbidities, and with the additional medicines that are now coming onboard that I now need to take, and a lot of us after a certain age, need to take.
T:[OJ246] No, I agree; and I think for me, I… you know, I’m coming to the end of my first decade of HIV, and I in my mid-thirties, am starting to take medications for other things already; for mental health, for my bones, and it’s just, like you said, medications that have less interactions with all the other medications I’m going to end up taking.
T:[OJ247] Whether that means we have new drugs that don’t interact with the other medications, I don’t know; whether we start taking less HIV drugs, whether we take the drugs less frequently; I just want an easier life where things don’t interact and you know, fewer… fewer side effects that impact me and my quality of life on a daily basis.
T:[OJ248] Well, fingers crossed for the future. That’s it for today’s episode; I’d like to thank Brad and Bryan for being here. The next episode will drop in March, and if you haven’t already, please don’t forget to subscribe to Positively Thriving on Spotify, Soundcloud, LiVLife or YouTube. Take care.
A warm welcome
T: Hello and welcome to Positively Thriving, a podcast for people living with HIV by people living with HIV. This podcast is brought to you in partnership with ViiV Healthcare. My name is Tom Hayes and I've been living with HIV for nine years this year and I work for the charity ‘Saving Lives’. I'm joined today by two incredible women who are here to share their insights into life, love and the future of HIV. To my right I've got Sam - if you'd like to introduce yourself and tell us maybe what you've been up to recently.
S1: Hi everybody. My name is Sam and I'm from Bournemouth and I currently manage ‘Body Positive Dorset’; and something exciting I've been up to, let me think – okay, lots of sex with Tinder dates.
T: You swiped right.
S1: Yes, I swiped right. I got fed up of swiping left, so I actually found somebody to swipe right with and yes - that's been going really well actually, so all good fun.
T: Glad to hear it; and to my left I've got Susan.
S2: Hi, I'm Susan; I work for NAM aidsmap, the HIV information charity. I've been living with HIV for about 21 years and I'm like, well jealous of Sam, you go girl. In terms of something fun that I've been doing, let's see – Ooh, on Wednesday I had the VIP experience at Phantom of the Opera. It was absolutely extraordinary because I did a talk recently to actors at Her Majesty's Theatre and as a thank you I got incredible seats for me and my mum and my two younger kids, and we even went into the VIP room at intermission that had Princess Diana's special toilet that she used to use with gold wallpaper made of like real, gold leaf; that was awesome; my kids were like - oh my god, my bum's been somewhere that Lady Di has had her bum.
S1: My whole face then was in awe of that story. That is amazing.
T: Good lord.
A shock to the system
T: Awesome, thank you both for being here today. So in 2020, women account for more than half of all people living with HIV and worldwide, HIV remains a leading cause of death for women aged 15-49. International Women's' Day has just past on the 8th March, and today we're going to be focussing on the issues affecting women living with HIV. So Sam, you said you were diagnosed in 2007, was it?
S1: Yes, that's correct.
T: Could you share some of your diagnosis story with us? Was it a big shock to you when it happened or was it something that was on your radar?
S1: No, it wasn't actually on my radar, I unfortunately had – I picked up an STI from, you know, just having rebound sex strangely enough, and…
T: We've all been there.
S1: Yes, thought so. And I went to the clinic and I was 40 years old so I'm thinking - I've kind of lived through the '80s and '90s, have practiced safe sex maybe not all the time – yeah what the heck, let's have an HIV test. And a week later, huge massive shock when they actually told me yes, I was HIV positive. And I think for about the first 3-5 years I kind of – actually the first three years I really fell apart. Then about five years into my journey I met a group of women, it was actually at the time called ‘Pos Fem’, and to me that was a massive pivotal point in my journey. Because that made me be able to turn my life around and to become a woman living with HIV rather than the other way round.
S1: For me, that peer support was a massive part of that journey. So that's now enabled me to have the strength to be an advocate for other women. But also looking after the wider community in Bournemouth and surrounding areas.
T: Amazing. So that was 2007 – that's 13 years ago. Susan, you were diagnosed 21 years ago whilst you were living in America?
S2: Yes that's right. I'd recently got married to my second ex-husband.
T: Two of how many?
S2: I've had three so far. Yes, I collect ex-husbands a bit like shoes and handbags. I've probably got some shoes longer than I've had ex-husbands. So I had an HIV test through a routine immigration test in Louisiana where my husband lived. And it didn't cross my mind for a moment that I could be positive - I'm from Croydon, a very boring suburb of London where nothing ever exciting really ever happens. And all I knew about HIV was very much the ‘Don't Die of Ignorance’ campaigns and I really didn't think that it was something that would affect anyone like me.
S2: The way I got my diagnosis was initially the doctor said - well the good news is you don't have syphilis; and I was like yay no syphilis – hurrah. But the bad news is, you're HIV positive. That was an extraordinary shock. And because I knew so very little I said; well how long do you think I've got to live; because at the time I had two kids and they were about four and six at the time; and the doctor actually said to me, ooh about seven years or so. Which was absolutely ridiculous because there was effective combination…
T: It was '99 so…
S2: Yes, there was proper combination therapy then. I mean my coping mechanism was to actually find out everything that I could about HIV; and even though I was in Louisiana which is sort of an interesting place.
S1: I can imagine.
S2: I got information from ‘NAM Aidsmap’ where I'm working now; and I realised that actually that doctor was talking nonsense; and for me, finding out everything that I could about HIV and about treatment was enormously helpful for me, because I think very much that knowledge is power when it comes to HIV.
Finding your sisters
S2: And also; I mean I got support from ‘Positively Women’ as well, did you?
S1: Snap. ‘Pos Women’ - that was the point for me where I just saw – the only way I can explain it is walking through double doors and seeing this whole massive group of women that I knew were all living with HIV but; such an array of people and experiences and ages and nationalities and it was – I'm still – half those people now I'm still friends with. In fact I'm going after today, I'm going to visit one of my friends for the weekend. Without that peer support I don't actually know where I'd be right now.
S1: Definitely not here.
S2: I absolutely agree. I mean I was in Louisiana at that – then I had information sent over; but when I came back to the UK, ‘Positively Women’ was extraordinarily important for me; and peer support; and having that support from other women who actually can understand what we're going through…
S1: I hear that.
S2: It's so important.
S1: It actually makes me feel really emotional talking about it now; thinking of all the different women I've met over the years and how – I don't know, it's almost like you become family.
S2: Yes, that's exactly – that's what I was going to say.
S1: Yes; so it's like I have this huge abundance of sisters. I've got two brothers, where I live in Bournemouth but across the whole, kind of UK and maybe parts of the world I have this huge family of sisters which; I love them all.
S2: Absolutely. One of my sons works for a HIV charity now, ‘Stop Aids’, and he was at the international conference a couple of years ago and he said; so many women went up to him and said; oh you might not have met me but I'm your auntie. It was like a network of my sisters of women living with HIV.
S1: Yes; I love that family connection, it's amazing. So you've got two sisters with you today.
T: I do - I'm very lucky. And you're both very differently located. So Susan, you're in Croydon, which you maintain is part of London.
S2: That is the centre of London - please don't diss Croydon Tom.
T: We usually find you stalking around conferences in ridiculously pretty ‘Louboutins’.
T: Whereas Sam - you know, you run a service in rural Dorset and we're more likely to find you in a pair of wellies in a field.
S1: That's very true.
T: How does that affect you being able to access services and the people you support access services?
S1: Myself, I feel quite isolated if I think about the peer – women peer support that I can get in Bournemouth or even Dorset for example. So for me to access that I need to have a – your finger on the pulse type of thing. Making sure you're keeping up to date with Twitter and stuff like that; because that's where I see all that, you know, the other stuff; I can watch things; I can hear other women or by attending women's weekends – I recently went to a ‘Women Living with HIV and Ageing’ which covered a lot of the menopause.
S1: So, without that, again - I don't really know how I would have navigated myself through what's been a real rollercoaster of a journey. So I think that's the only thing for me living in Bournemouth - is being able to either look at social media or like I said, travel to London; it's normally London that I'm travelling to for that support.
S2: Yes; I think in many ways I'm quite lucky to live in London because I have so many choices where it comes to where I access my care; so for instance; I live in Croydon which is actually proper London, but I travel to Chelsea for my HIV care and had swapped from another hospital; and I have really easy access to support groups, because I think so many of the groups are in London; but like you, quite a lot of the support that I get comes from networks of women living with HIV. I know that we're on some of the same WhatsApp groups.
S1: Yes we are.
T: What do those WhatsApp groups do?
S1: Well I see it, I suppose, as a safe space for women to stay in touch with each other without actually having to live next door.
T: So it's informal peer support?
S2: Absolutely; and also, you know, we share information; I’m spamming the WhatsApp groups with links to NAM's resources but yes, it's really a support network; it's an empowering support network.
S1: I totally agree - I'd say keep spamming, because without that spam, I would just be stuck in the hotspot of Bournemouth, which is the town centre of Dorset.; we do have nice beaches people; I'd be lost, so keep spamming.
S2: Okay - fantastic, brilliant.
Is it getting hot in here?
T: Moving onto another hot topic, almost literally; Sam - you mentioned the menopause.
S2: I am actually taking off my cardigan now as we speak.
T: By 2023, it's estimated that 20,500 menopausal women will be living with HIV in the UK. Meanwhile, a survey said that only 46% of GPs would be confident managing menopausal women living with HIV. Sam - what's your menopause experience been and, you know, has it been challenging because you've been HIV positive? Have there been barriers to your care?
S1: So, I went to a women's weekend and I actually learnt that in that process I'd actually had a premature menopause; I wouldn't have known that without listening to – I can't remember the lady's name - amazing doctor who does the menopause clinic in London; and I learnt so much. But it was also; what I found was difficult was - how do you separate some of the symptoms that you're maybe experiencing? Is it menopause or is it side effects of medication? Or if you've got other comorbidities, is it to do with those?
S1: I think that's where maybe the GP struggles because it's almost like - you know, how do they separate it?
S2: Absolutely - In terms of my work at NAM, I run workshops for women living with HIV on different issues and the menopause is something that comes up a huge amount of time and is a real issue; and that's very much what people are saying to me in relation to having symptoms and not really knowing if it’s the menopause; is it HIV medication; is it just like ageing generally; is it HIV itself; and women are so often ping-ponged between healthcare providers in terms of going to the GP who says - actually, I think it's about your HIV care; you need to see your HIV consultant - who then says; no actually, that's something for your GP to do.
S2: When we get other conditions as well - we're sent to see a specialist who then ping-pong us back again; it's a really dizzying experience. There are questions that I think even the doctors aren't quite sure about at the moment; like for instance - are women living with HIV having symptoms of the menopause worse? Are we getting the menopause a little bit earlier than the general population? It's a real issue but it doesn't have to all be doom and gloom.
T: So Susan, one of the questions I've heard , is that sometimes women with HIV can't take HRT for the menopause.
S2: I think that women with HIV can usually take HRT; but what I would say to all women is - do check it with your healthcare provider, just in case there are any interactions. There are also some very useful apps like the Liverpool Drug Checker and also you can go onto aidsmap.com where we have a drug interaction chart. there's lots that you can be doing about it.
S2: For instance - some of the issues that women have are things like dry vaginas…
S1: Great conversation.
S2: And painful sex, but there is stuff that you can do about it. HRT can be really helpful. Even if you can't take HRT, there's topical hormones that you can take; that really helps with the dry vagina side and oestrogenise – is that a verb – can you oestrogenise? Or progesteronise your vagina? So that could help so much.
S2: I think, even though we might be getting older, that certainly should not be a barrier to having fun and enjoyable sex if that's what women are choosing to have.
S1: Exactly - I learnt so much that weekend.
S2: I think women are often embarrassed to talk about sex; and the menopause is like one of those things that - it’s going to happen to all of us women, but it's one of those things that there just isn't enough of a conversation about; there isn't enough of a conversation about sex as well.
S1: Oh, let's talk about sex.
S2: That's some of the issues that came up on ‘Aidsmap live’ - I host a live panel discussion about issues around HIV and the last one we had was on HIV, sex and relationships; within a week it’s been watched by more than 20,000 people around the world.
S1: That's amazing.
S2: Thank you. I looked at some of the results and the majority, more than double, were women who watched it.
S1: I think that is so empowering; going forward I'm thinking of - how we can create a WhatsApp group for women, peer-led? I'm going to try and connect it with the clinic as well, but then I'd be able to share stuff; I'd be able to spam my WhatsApp group with your videos; I think that would be so amazing for people to be able to hear that and have that opportunity; but if they don't know it’s there, then they're not learning that they're not alone. All those symptoms they're suffering with, actually, there's actually you know, as we said earlier, globally - what was it, 51% of women living with HIV?
S1: So you know, you're not alone.
S2: Even for me - I get repeat urinary tract infections. I thought that that was something that was just happening to me; and then in terms of the sessions that I've been running - so many of the women who are attending are saying that they are also having that problem and we all look around the table and kind of go - oh my god, I thought it was just me. It's so important to actually share those experiences and learn from each other; so even though I'm meant to be teaching people stuff, I leave learning an enormous amount from the women who are at the group.
S1: Yes, and I think you're so right– it doesn’t matter what – you can upskill yourself all the time; that knowledge of being powerful; you can just keep empowering yourself and learning as you go through your journey; and then hopefully like - for obviously what we do in the wider community - is support other women to navigate through that really unknown area of the menopause.
S2: Absolutely - it's a real minefield and I think sometimes it can be really helpful in terms of having a healthcare professional that we could use as a central figure to coordinate our care.
S1: That would be amazing.
More data please
T: Susan, we know that women living with HIV are only included in about 20% of all research. How do we change this and do you have any good examples of where women have been included or led research?
S2: There's an absolutely brilliant piece of research called the ‘PRIME’ study that's led by a number of awesome doctors who work in HIV; that has some really important results in relation to HIV and the menopause.
S2: And it's so important. I think very often our experiences can be different to men. There was recently a news story on ‘Aidsmap’ linked to the ‘PRIME’ study that specifically focussed on the experiences of black women living with HIV in the UK; it was quite staggering, because it demonstrated that in terms of older women living with HIV, black women were more likely to experience emotional distress but less likely to be offered support in relation to that; I thought that that was a really worrying statistic; I was really glad that the ‘PRIME’ study have teased that out and I'm sure there's going to be other wonderful important gems that come from that study.
S1: Yes, I totally agree with all of that.
T: It would be great to see more research into social issues affecting women with HIV rather than the studies previously, which have tended to view women as reproductive units. There's a lot of studies into the effects on pregnancy, on birth and on breastfeeding but not so much on the social issues affecting women with HIV; especially the menopause. I think if there are any researchers listening in - there's some great opportunities and really important areas that need covering.
T: Talking of social issues that affect women - is it more or less difficult for women to share their HIV status with their friends and partners than perhaps it might be for gay men do you think?
S1: I don't want it to seem like it’s – I think it's just mainly for different reasons. I think like you said earlier Susan - we don't want it to be all doomy and gloomy because we're living well with HIV; but there are certain experiences I think women may face more than men; obviously gender-based violence being one of those; I have my own personal experience of that.
S1: Whether people like to say it exists or it doesn't - it actually does. Women have to – when you're talking to women about how to tell somebody you're HIV positive - we always have to talk about telling them in a safe space; making sure you've told someone; almost that you're going to tell someone you're HIV positive - that makes it very loaded because then it sounds like you're going to be attacked just for telling somebody.
S2: Absolutely, I very much agree with you; and also there's the whole issue about – actually, is it necessary to tell someone? I think even beyond the safety issues, ultimately, it's a matter of telling someone when you're comfortable to do so and doing it in the way that works best for you. I think the U=U message that, if someone has an undetectable viral load they can't pass the virus on, it's quite helpful in that respect; because if you have an undetectable viral load, you're not posing any risk of transmission to your sexual partner; so you have to consider the impact of that and that can be quite helpful as well, I find, for many women in talking about their HIV status - so in a way that you can actually talk to your partner about the fact that you aren't a risk.
S2: The reality is - they are more at risk from people who don't know their HIV status than they are from us.
S1: I sometimes wonder though if it's almost associated, still, with that part of women shouldn't have sex unless they're having babies.
S2: Yes, I know.
S1: Or we shouldn't have more than one sexual partner at a time.
S2: It's such double standards where it comes to women; it's also really frustrating as well in terms of reports and studies that focus on women living with HIV is always linked to reproduction, because so many of us may choose not to have kids or may not be able to; so we need to bear that in mind; you have kids?
S1: Yes - I've got two grown up children and three grandchildren; but do you know what, I actually – if I think about it, I had my children really young; but what I realised and especially through all of this journey, that being a woman doesn't naturally mean you're maternal; why is it assumed that just because you're a woman, you're going to have this maternal streak that you're going to love babies? Some women - that's just not what they want; well, they want a choice.
S2: Yes, absolutely.
S1: I mean, I'm lucky; I had my children when I was so young, because as I said, premature menopause; so I was – I only had 15 years of being reproductive; so I had a really short time to churn out babies; so I only churned out two.
S2: How many do you have – you have two?
S2: I've got four.
S1: Four, okay.
T: I'm the eldest of four, so I can imagine how challenging that was for you.
S2: One of the myths that I find really difficult is that sometimes people think because a woman has HIV, she can't have children, which is absolute nonsense.
S1: It's like we're selfish.
S2: It's absolutely ridiculous. When I was pregnant with my son who is now 15, I did a naked cover of ‘Positive Nation’ magazine, heavily pregnant; I mean it was brilliant because they airbrushed out my cellulite and…
T: Is that still your Facebook photo?
S1: I'm going to Google it.
S2: I felt it was so important to show that women living with HIV can go on to have children; have HIV negative children who are going to be really healthy. HIV should not be a barrier for living a full and healthy and happy life.
S1: I totally agree with that. I got lost in that moment then, because it was almost like being empowered just in that moment of what you were saying - feeling of how this message must feel to other women if they were listening if that makes sense.
Standing up against stigma
S2: As a woman living with HIV, have you experienced any stigma in healthcare settings? Because I've heard so many experiences from women where we're more likely to experience problems there than anywhere else.
S1: Yes, no, I think you're right. I suppose my kind of experience personally would be perhaps; maybe; because I was a white middle-aged woman being diagnosed with HIV. Obviously the question is, how did you get it? But then they normally proceed with - are you a sex worker or are you an intravenous drug user? So, it's almost like maybe I look like I don't have sex or something; I don't know. But yes, it's always the further questions of why I've actually got HIV.
S1: I don't want it to sound all bad, because I do have good experiences; but I've had medication thrown into a room a hospital room, because the nurse didn't want to come in; I've had a physiotherapist say he wasn't going to get HIV off my feet; I did offer him sex actually without a condom, but; and explained U=U and then told him that if he caught HIV off my foot we were going to make millions.
S2: That's absolutely awful. My first experience of HIV related stigma, and that was when I had – I had breast cancer a few years ago and I had an oncologist ask me about how I got HIV, what I was doing to prevent passing it on to other people - I complained about him and changed by care to another hospital.
S2: Similarly after I'd had surgery, S2: 27:26 I was really lucky despite having breast cancer was that I had a breast uplift on the NHS as well - so every cloud has a silver lining.
S1: Breast cancer not a great thing; but the uplift…
S2: I can take my bra off now and my boobs will just stay there.
S1: Jealous; that does not happen with me.
T: Sam's just got the squeaky bra.
S1: Yes, I have the squeaky bra.
S2: The issue that I had when I had surgery; I came round and then I had a nurse come in and say - Ooh, I'm having a look at your records and I see you've got; you take lots of medications; what are these medications for? There was a room of other women who were just like - sat up slowly and stared at me and I said - you know, I suggest you go back, read my notes properly and when you come back we can talk about this; but it was hard even for me because I was in a vulnerable position; but this is my job and this is what I do; so when I think about the situation that other women are in, it's awful and it's so wrong.
S2: From the moment of diagnosis we're protected from discrimination and we need to stand up for our rights.
S1: Yes, I hear you exactly; like you just said - we're able to have that voice and stick up for ourselves and even add a bit of humour to it with a boob lift; but if you haven't had that experience of meeting other women, for example, you wouldn't know maybe how to answer those questions. Some people might not even go back to follow up appointments, which obviously is totally detrimental.
S1: Another recent one was with nurses; I suppose kind of touching on women when a patient, HIV positive patient; this is so awful; had a pen and the nurse went to give the pen back to another nurse, and they went - no I don't want that.
S2: That is awful…
T: Is this like the last year or so?
S1: This is from a session last week I got told this.
S2: A couple of weeks ago I was running a workshop and a woman shared with me an experience where she was in the hospital and the nurse who gave her her medication, gave it to her on a spoon so she wouldn't have to touch her; the medication fell off the spoon on to the bed and then the nurse scooped it up rather than pick it up and then did it again; these are the things that are happening today, still; fortunately, it isn't as bad as it used to be but it’s still going on; it's so important that healthcare providers are educated properly about HIV; very often we're hearing about GPs not being great and they're a group that can really benefit from more education.
S2: Although yes - so many of them are brilliant, so I'm by no means tarnishing all.
S1: No, it's like you said - a lot of things have got better and I've seen that in the humanisation classes that I run.
T: What's humanisation?
S1: So the humanisation days are with Bournemouth University; they have second-year healthcare students; so they're working in either hospital, GP surgeries, even surgery nurses - stuff like that - where we give them up-to-date information on living with HIV and how not to discriminate somebody; not to treat them any differently or not worry about their pen; not have to write extra precautions on their paperwork.
S1: But just that a little bit of up-to-date upskilling yourself; it doesn't take a lot that you can just provide a little bit more care which doesn't stigmatise and doesn't discriminate against somebody; like we just said - that means that a lot of women are probably missing cervical smears, for example; we're supposed to have them yearly.
S1: So if they've been put off by either their clinic or their GP, are they having those smears?
S2: Absolutely, I agree with you and I agree with the point that you made that very often this behaviour comes about from people just not knowing; so I'm trying not to use the word ‘ignorance’; perhaps would be better to say a lack of education in relation to the reality; yes - a lack of education about the reality of HIV today, because HIV has changed.
S1: Yes, it has changed.
Powerful positive women
T: If you could wave a magic wand and change the way people are perceiving HIV, what would that be? Would it be a campaign, or would it be GP education, would it be a celebrity coming out as HIV positive? Would it be something in the papers? What do you think would really impact the public and the healthcare professional's understanding of HIV?
S2: I think that's a really great question. I think I wouldn't like to choose one of those.
T: All of the above.
S2: All of the above, but in relation to a celebrity coming out with HIV, like a female celebrity, I think very often there's a pressure on people to come out about their HIV status and I'm sure there are celebrities living with HIV who are female. But you know, essentially that's their business. If they choose to talk about it, it’s up to them, but I don't think that they should in any way feel pressurised to do so. And we have some incredible positive role models of women living with HIV who are out…
T: Like you two. Well you are.
S1: Thank you.
S1: But there are a lot of great other people like Jo Josh, who is a trustee of the Sophia Forum and does the comms for the British HIV Association. She's often on television talking about her experiences; and when people see a rather posh, slightly older white woman living with HIV, it sort of shocks them out of their complacency; and they realise that ultimately, HIV can happen to anyone and it makes it more pertinent to them when they see people that they can relate to; I think.
S1: There are such amazing powerful women living with HIV who without their knowledge, I wouldn't be doing what I'm doing now; people from ‘Pos Fem’ like Silvia Petretti - I never say her name properly.
S2: Silvia Petretti.
S1: That’s it, she'll like that; I've always been in awe of that lady.
T: She is so glamorous.
S1: I know - I want to be glamorous sometimes; but anyway that's really going off the point. We have some amazing, real women who can do all of that stuff without having to be a celebrity and they are doing it because they want to, not because they've been forced to.
S2: Absolutely; and people like Angelina Namiba who is absolute ultimate heroine; we spoke about her at the last ‘Aidsmap live’, where we were talking about the use of the word ‘disclosure’.
S1: Oh - how language is used at the moment…
S2: Tom brought up where she said - there's no good words that begin with ‘dis’; the only good word that begins with ‘dis’ is ‘disco’.
S1: I use that example in my education as well when we're trying to do language use.
S2: Yes, because I think when we talk about HIV, if we use the word ‘disclosure’, it makes it seem like it’s a negative thing.
T: A legal requirement.
S1: Heavy-loaded, I always think, that word. It's like you said - you're just going to give someone this really huge secret and then it's like - what are they going to do with it? If you just say - I'm telling you something - it takes away that kind of, you know – I'm sure my mum tells everyone anyway - hello, this is my daughter Samantha, she's living with HIV.
S2: Yes, so telling or sharing I think is much better.
S1: Yes, I agree.
May the fourth be with you
T: A number of years back, the UN Aids set a goal - a global goal the 90-90-90 goal. This is where the world is aiming to have 90% of people living with HIV knowing their status. 90% of those on treatment, and 90% of those on treatment with an undetectable viral load. We're now talking about a fourth 90, which is a good quality of life. If I could ask both of you what a good quality of life means to you as a woman living with HIV. Sam…
S1: I think aging well with no discrimination, which would be really nice; a great sex life, and not being judged for having a great sex life either. I'm not sure I can think of anything else. What about you?
S2: I think it's a really big question as you said. I think there's so many different elements to a good quality of life. I would say living free of stigma, not merely surviving with HIV but thriving with HIV.
S1: I love that.
S2: We’re so lucky in terms of the fact that there are many different medications available at the moment and I think it's really important for people to live well; that they're not being burdened by side effects; from their treatments we're finding a treatment that works for you with the minimal or ideally no side effects; I think all of those things are really important; I think having a good sex life is important, if that's what you want to have ultimately.
S1: Exactly - it's about choice.
S2: It's all about choice and everyone is so different in terms of what they regard as important to quality of life; but I think it's brilliant that now we're looking at the fourth 90 and quality of life. I think medical professionals need to consider that a lot more. There is so much more than the bio medics; so much more than our HIV status; we're more than our viral load and our CD4 counts and they need to look beyond those tests and look at the human beings that we actually are and the unique women that we all are.
S1: I echo that so much. So powerful, because it's true, it really is true.
T: One of the clinics I work at ask their patients at the beginning of the year what they want to achieve by the end of the year, so they can measure whether they've achieved their quality of life goal. If there's one thing you could achieve by the end of this year Sam, what would it be?
S1: Well strangely enough our clinic doesn’t ask that question.
T: Maybe it should.
S1: Maybe they should; so maybe I should introduce that to them. I realised myself that the quality of life for myself is really important. One of my goals this year is – it might not be that exciting for some people, but I am aiming to go to Amsterdam; so I'm practicing self-care as my quality of life at the moment.
T: How about you Susan?
S2: That's really interesting about going to Amsterdam. There's a really important conference that's happening this year in San Francisco, so if there's anyone listening out there that can help me get to San Francisco that would really help my quality of life; but apart from that I think that I would like to be healthier; I think that I would like to finally sort out the health issues that I'm having, because I think very often women living with HIV, we're not feeling well but we just keep battling on; just keep on going and think - oh I'm in pain or I don't feel well, but I've still got work to do; I've still got kids to look after; I've still got the shopping to do. I think it's a bit more self-care and try and be in better health and get more sleep as well will help.
S1: I'll second that, that's definitely more sleep.
T: Something you mentioned earlier Susan was that you are not living with HIV - you're thriving with HIV. So, ‘Positively Thriving’ is the name of this podcast so you did very well there. What does positively thriving mean to you though? What is it to thrive with HIV?
S2: I would say for me, thriving with HIV is not being limited by the virus and living my best life essentially; I don't think that HIV in any way limits me; It doesn’t define me, it just happens to be a virus that I have. It's been positive in some ways because I've made so many of my very best friends through the network of people living with HIV; and the sisters that I have like Sam.
S1: I love my sisters.
T: What is positively thriving for you Sam?
S1: I'm a woman living my life, going on holiday, hopefully this year, and practicing self-care. Yes, living my best life is the way forward.
T: Looking back what do you wish you'd known then about HIV that you know now? Sam?
S1: I think the instant thing I wish I'd kind of known at that point of being told was that I wasn't going to die; because I just think it's that awful feeling; if I'd have known that, maybe it would have been a little bit easier at the beginning; but also, I think another big thing was that I wasn't the only woman. To me, I live in Bournemouth - it felt like I was the only woman living with HIV in Bournemouth. So if I'd have known that then, I think things might have been slightly easier.
S2: I wish that I knew I wouldn't die in seven years like that stupid doctor told me I would when I was diagnosed. I also wished that I knew that it would be fine to go on and have kids which I did, and that HIV wouldn't stop me from having a full and fabulous life essentially.
T: Final question to you both.
T: If you were to meet a woman that's just been diagnosed with HIV today, what would your one message to her be?
S1: Well I don't want it to sound corny, but really strong message is - you're not alone; and what worked for me was finding peer support; so go out and do the same; go and find some female.
S1: Sounds a bit corny, but I would say you're not alone because you feel alone but you're actually not. There are other women out there living with HIV; and accessing peer support, because I know it worked for me - give it a try - it will probably work for you too.
T: And Susan, what would your one tip be to a newly diagnosed woman today?
S2: I would say - get information because knowledge is power.
S2: I would recommend going to aidsmap.com, the HIV information charity where we have a wealth of resources at various different levels. News stories and a really useful factsheet about the menopause. If you don't want to read written resources, checkout ‘Aidsmap live’ on ‘NAM’s’ Facebook and Twitter pages which is a really fun and informative way to find out about HIV and it's a right old laugh as well.
S2: Don't worry - you're going to live a long life, so buy some moisturiser of a really good quality because you're going to live a really long time and have a full life.
T: Thank you both for being here. That's it for today's episode. Don't forget to subscribe if you haven't already. You can find Positively Thriving on Spotify, Sound Cloud, LiVLife.com or YouTube. Thanks and take care.