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.

COMING SOON!

Episode 1/4
Episode 1/4
In our taster episode, Tom, Sam, Robert and the fantastically youthful Brad introduce you to themselves and provide a flavour of what to expect from our podcast series.

Transcript

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.

 

T:[PK2]          To my left, I’ve got Robert Fieldhouse;

 

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.

 

T:[PK4]          Brad, to my right?

 

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.

 

T:[PK7]          That’s amazing; and Sam, if you’d like to introduce yourself.

 

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.

 

S:[PK10]         I don’t mean to laugh; I was.

 

T:[PK11]          You couldn’t even eat in front of us; I remember you taking your dinner each night to your hotel room to eat it on your own.

 

S:[PK12]         I don’t mean to laugh, but yeah, that’s so true. Yeah, definitely changed.

 

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.

 

T:[PK15]          Robert, what does Positively Thriving mean to you and what do you want people to get out of this podcast?

 

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?

 

S:[PK18]         Oh, that’s a massive question; will I ever 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…

 

T:[PK23]          You don’t look a day over fifty…

 

B:[PK24]         Ah, thank you. I even look… I look even younger after a few drinks and dark lighting.

 

T:[PK25]          Don’t we all?

 

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.

 

T:[DJ30]          Thank you.

 

B:[DJ31]         That’s one, anyway; so, you go on to another one; I’ll think of another one.

 

T:[DJ32]          Sam, pick out two topics you’re…

 

S:[DJ33]         Two topics

 

T:[DJ34]          Well you can do one if you want.

 

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.

 

T:[DJ37]          Thank you; and Robert?

 

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.

 

T:[DJ40]          Brad?

 

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.

 

S:[DJ45]         I agree.

 

T:[DJ46]          Just before we wrap up, say one thing that you hope people are going to get out of this podcast by listening.

 

B:[DJ47]         Well I think; well, of course, you can’t see me in this radio, but I’m…

 

T:[DJ48]          He’s very glamourous.

 

B:[DJ49]         Yeah; I’m fantastically youthful.

 

S:[DJ50]         Very glamourous.

 

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.

 

T:[DJ52]          Robert? What would you like people to… one thing they could get out of this?

 

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.

 

T:[DJ54]          And finally, Sam?

 

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.

 

T:[DJ58]          So, be sure to watch out for the next episode on Spotify, Sound Cloud, Livlife.com, or YouTube.

Also available on:

COMING SOON!

Episode 2/4
Episode 2/4
How do you move from the uncertain days just after diagnosis to feeling totally in control of your life and future? Tom, Sam and Robert discuss self-advocacy, treatment and quality of life – plus Sam reveals why getting kicked onto a train was a game changer.

Transcript

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;

 

S:        Yeah;

 

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.

 

S:        Definitely.

 

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.

 

T:         Congratulations.

 

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.

 

T:         Okay.

 

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

 

S:        Okay

 

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.

 

S:        Pardon?

 

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.

 

S:        Exactly.

 

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.

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