STARTING YOUR HIV JOURNEY

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CHOOSING TO SHARE YOUR HIV STATUS

Choosing to tell someone that you’re living with HIV can feel like a big step. You never know how they might react and that can be challenging.

It’s important to know there is no right or wrong way to do it. Take your time and make sure you’re ready, and remember, if you never feel ready that’s ok too. The decision to share your status should always be your choice and your choice alone.

Explore the tabs on the left to find more support and advice for whenever you choose to tell others about your positive status.

TALKING TO OTHERS ABOUT HIV

Click through the tips below to discover useful advice from people who’ve been there.

  • <b>TIP 1</b>: Decide who you want to tell and why

    Telling others about your HIV status should always benefit you first. It’s your decision and you shouldn’t feel pressured into doing it.

  • <b>TIP 2</b>: Be prepared with the basics

    Make sure you know the facts about HIV – how it affects your body, how treatment works and why U=U means you can’t pass HIV on to your sexual partners. Remember, with effective treatment and care you can live a long, healthy and happy life. You can still have relationships, you can still have children, you can still work – you can still do everything anyone else might do.

  • <b>TIP 3</b>: It doesn’t have to be a big deal

    You can simply sit them down and say something like, “I live with HIV. It is a virus that makes my immune system weak so I cannot fight off infections easily like other people without HIV. I take medication which makes my immune system stronger. My HIV status doesn’t stop me from living my life the way I want to.”

  • <b>TIP 4</b>: Tell them if you don’t want them to share your HIV status with others

    Explain that this is because not everybody is understanding or has the right information about HIV. Say that you have chosen to tell them because you trust them and value your friendship or relationship with them.

  • <b>TIP 5</b>: Let them ask questions and share concerns

    This is important as it can help ease both of your minds. If they ask you a question you can’t answer just say “I am not sure about that but I will get back to you with the correct information”. Don’t try and answer or explain anything you are not sure about.

  • <b>TIP 6</b>: Peer support can be very helpful

    If you are not sure whether you are ready to tell others, speak to people you know who have told others about their HIV status. Listen to their experiences and find out what worked for them.

  • <b>TIP 7</b>: You don’t need to do this on your own

    Always remember that it’s your HIV status and how and when you tell others is your decision alone. Getting support from people you trust can make the process easier, so reach out if you feel ready.

  • <b>TIP 8</b>: Dealing with negative reactions

    If someone reacts badly to the news that you’re living with HIV, it can be upsetting. Talking your experiences through with other members of the HIV community, friends and family, your healthcare team or a counsellor can help.

Telling others: Tom’s story

Speaking from his own experience, Tom offers advice on how to  disclose your HIV status to others and the importance of talking to the right people.

Telling others: Romy’s story

After diagnosis, fear played a large role in Romy’s life. But, with the support of her therapist, she built the confidence to share her status with her father and others.

Telling others: Angelina’s story

Telling people about your HIV status can be a huge relief, but it’s okay to wait and only let others know once you are ready.

NP-GBL-HVU-WCNT-210089 | May 2023

CHOOSING NOT TO SHARE YOUR STATUS

Choosing not to share your status

Sharing your status can be an incredibly empowering experience that can make living with HIV a little easier – but it’s not always a simple decision to make.1

Telling others you’re living with HIV is also referred to as ‘disclosure’ or
‘disclosing your status’.1 There are plenty of reasons why you may not
feel comfortable or wish to discuss your status with others, and that’s ok.
It’s private information and it’s your right to wait until you are completely
ready to share your status with anyone – even if that person is your best
friend, partner, a family member or employer.1

When making the decision not to share your status there are some things
to keep in mind.

Choosing not to share your status

In this short video, Susan and Bakita provide some facts about sharing your status and discuss those times when they have decided not to share theirs.

Do I have to tell other people?

It’s up to you to decide when you’re ready to talk about your HIV with others. You should never feel rushed or pressured into it – take your time if you need to.1

Understanding that Undetectable = Untransmittable (U=U) has helped many people living with HIV feel more confident about their status.2 Being ‘undetectable’ means that your HIV medication is keeping your viral load so low that HIV can not be detected in blood tests or passed on via sex.2 Having this knowledge can help conversations with other people about HIV and give them an understanding of what it means to live with HIV today.

Find out more about the empowering message of U=U.

  • Relationship

    Deciding whether or not to tell your regular or casual sexual partner/partners that you’re living with HIV can be complicated. It’s completely your choice if, when and who you share your status with.3

    Globally, the laws around sharing your status differ, so to protect yourself it may be worth researching the legislation in your country of residence.4,5

    If you’re in a long-term relationship, keeping your HIV status to yourself for too long may not be a good idea. The longer you wait, the harder it can become.3 Many people with HIV find sharing their status is empowering. It brings them and their partners closer once it’s out there in the open.4 If you’re finding it difficult to tell your partner, it may be helpful to talk to a friend, a counsellor, your healthcare team, or someone else living with HIV to support you through the process.4

    Relationships

    In many countries, as long as you’re taking precautions to prevent sexually transmitting HIV, you don’t need to share your status with your partners if you’re not ready to.4 Taking your medication as prescribed is an important part of ensuring you and your partners are protected, this is also called ‘treatment as prevention’.6 This is because Undetectable = Untransmittable, which means if you’re on effective medication and have an undetectable viral load, you can’t pass on HIV via sex.2 If you’re having difficulty taking your medication as prescribed, talk to your healthcare team about your concerns or ask other members of the community for their tips to stay on track with your treatment routine.

    It is important to note that in some countries, if you choose to not share your status, or not taking your medication as prescribed and then partake in condomless sex, you could be charged with a criminal offence if you were to transmit HIV to a sexual partner.4 In other countries, you may be required by law to share your status with your partners before having any sexual contact. There have been very few legal cases but it’s important to check what the legislation is in your country just so you are aware.5

  • At work

    From potential side effects of medication to the emotional challenges some people living with HIV experience, there are many things that can affect you in unexpected ways. Occasionally, these factors may impact your work but that is not the case for everyone. If living with HIV has no effect on your work performance or ability to do your job, there is no reason to share your status with your employer or colleagues if you don’t want to.4

    At work

    However, if you are struggling at work because of issues relating to your HIV, it may be a good idea to tell your employer privately. As a chronic medical condition, HIV is covered by equality legislation in many countries.4,7 This means that, if necessary, you can ask for an adjustment in your responsibilities or workload so that you can continue to do your job well, and your employer has a duty to take reasonable steps to accommodate this.4 If you have an occupational health policy at work, you may be able to see an occupational health adviser who can work with you and your manager to make the changes you need, and if it’s your wish, will keep your HIV status confidential.7 This may not be the case everywhere so be sure to check what legislations exist in your country of residence to support your work.

    There are some job roles that require you to disclose your HIV status, undergo tests, or complete HIV risk assessments (e.g. some healthcare roles, military personnel, pilots).4 If you don’t want to share your status, it may be worth checking the recruitment process prior to applying for these kinds of roles.

    It's not acceptable for anyone living with HIV to experience discrimination because of their status, although unfortunately this does still happen. In a work setting, discrimination could mean unfair dismissal, bullying or harassment, or discrimination in recruitment, promotion, training or benefits by colleagues or others.4

    If you feel you have been treated unfairly in work because of your HIV status, speak to your Human Resources department about making a complaint or contact your local HIV community group who can put you in contact with a legal expert.4

    It’s worth noting that if you choose not disclose your HIV status to an employer, it may be difficult to demonstrate discrimination from a legal perspective.4

  • With medical professionals

    If you’re receiving medical treatment unrelated to your HIV, there is no legal requirement for you to share your status with healthcare professionals.4 However, it could be important for your care, for example, your HIV treatment might interact with other types of medication e.g. change their effectiveness or cause side effects.4

    Like with any medical information, details about your status are protected by confidentiality laws, so if you don't want your family doctor to know for example, you can specify this with your HIV specialist.4

    Your HIV clinic may ask your permission to share your status with other healthcare professionals who might be treating you.4

    It’s a similar story with dentists. When joining a dental practice, you might be asked for details about your medical history, and this may include a question about HIV. It’s your call whether you share your status or not.4,8

    It is worth noting that the reason why dentists ask their patients about HIV is so they can look out for signs of any HIV-related oral health issues.4,8

Keep things discreet

There may be times when you are worried your status could be ‘discovered’ when you’d prefer to keep it private. It’s perfectly normal to feel this way.

It’s important that you never feel forced into a situation where you status is shared without your permission. To help, here are some tips about maintaining discretion.

  • Your medication

    If you’re sharing your home with a partner, roommates or family members but are not ready for them to know you’re living with HIV, you can choose to keep your medication somewhere private where it will not be found (e.g. your underwear drawer).

    Similarly, if you’re living on your own and you would prefer the contents of your medicine cabinet not to be scrutinised by guests, move your medication to a place that is easily accessible for you but not for them.

    Some people living with HIV may choose to ‘decant’ their medication into other containers. If this is something that you want to do, it’s very important to ensure that there is no risk of other people taking your HIV medication by mistake. It’s also important to remember that some medication may need to be stored with a desiccant to stop the medication from absorbing moisture which can impact its effectiveness.9

  • Travelling abroad

    If you’re heading overseas, it’s a good idea to carry your medication in your hand luggage in case your checked luggage goes missing or is delayed.9 It’s also advised that you keep your HIV medication in its original packaging in case you are asked about the pills in your luggage by customs officials.10 This can be a cause of anxiety for some people living in HIV, but it doesn’t need to be.

    Customs regulations in most countries require all prescription medication to be accompanied by a letter from the prescribing doctor explaining what the medication is for.9 Your doctor can explain that your medication is to treat a chronic health condition – they don’t need to mention HIV, so your privacy will be protected. Speak to your healthcare team for more information.

What should I do if I think I have been discriminated against?

If you feel you have been forced into sharing your status or have been discriminated against at work, in a healthcare setting or individually, there are community resources that can help you. Connecting with your local HIV group is a good first step. They can put you in touch with legal specialists, counsellors and members of the HIV community who can support and advise you.11

NP-GBL-HVU-WCNT-220013 | May 2023

HIV STIGMA AND DISCRIMINATION IN HEALTHCARE

Looking after your health and wellbeing is an important part of living well with HIV.

From time to time, you may need to access other healthcare services for medical reasons that are not related to your HIV, such as your dentist or GP.

HIV stigma and discrimination in healthcare

Sharing your status with healthcare professionals could be important for your health. For example, letting your GP know what HIV medication you take can help them avoid any potential interactions between the drugs they prescribe and your current HIV treatment. You should always feel comfortable discussing your health needs and should not be treated differently because of your HIV status.

Unfortunately, some people living with HIV do still experience stigma and discrimination from healthcare professionals. This can have a lasting impact. It can affect the way people feel about themselves and their HIV, and can put them off seeking medical help. As well as facing stigma, some people have to educate their healthcare professionals about HIV. This can lead to negative conversations and relationships, even if they aren’t discriminatory in a 'typical' way.

No matter your experiences, the type of stigma, or the reasons for it, the HIV community is here to support, empower and advise you – and this includes your HIV healthcare team. Reach out to your healthcare team or local community groups to find people living with HIV in your area.

  • What is HIV-related stigma?

    82% of people living with HIV said they experienced a form of stigma related to their HIV in the last 12 months12

    HIV-related stigma is prejudice towards, and/or negative attitudes about people living with HIV. HIV is a medical condition that is often misunderstood, which can lead to a lot of stigma. It is usually fuelled by a lack of knowledge or outdated ideas about what it means to live with HIV. Some people also make moral judgements about how someone may have contracted HIV – making presumptions about their lifestyle or having misconceptions about how the virus can and cannot be passed on.

  • What is self-stigma?

    Over a quarter of people living with HIV say they quite or very often have feelings of self-blame, guilt and a need for secrecy (297/1,111)13

    HIV stigma and discrimination can have a profound impact on the mental health and emotional wellbeing of people living with HIV. It can also lead to self-stigma. This is when people internalise negative ideas about living with HIV and turn them on themselves. It can lead to feelings of shame, fear of sharing your status, isolation and despair. These feelings can stop people looking after themselves properly, which can lead to poor adherence to HIV medication and further health problems.14

    Looking after your emotional health is essential for your overall wellbeing. Visit our Mental Health & HIV page to find out about how others have moved from a place of self-stigma to acceptance.

    U=U is an empowering message that helps a lot of people feel more confident about their condition and can help to reduce self-stigma. It stands for Undetectable=Untransmittable. When you have an undetectable viral load, the virus becomes ‘untransmittable’. This means that, with effective treatment, you cannot pass HIV on to your sexual partners.15

    With this knowledge, you can hopefully feel more comfortable in your relationships no matter whether your partner has a positive or negative HIV status. It can also help you feel empowered when discussing your status with other non-HIV healthcare professionals.

    Another empowering aspect of U=U is that an undetectable viral load dramatically reduces the risk of vertical transmission (which is when a person living with HIV passes the virus on to their baby during pregnancy, childbirth, or breast feeding). This means you can focus on the excitement of building your family rather than the fear of passing on HIV.16

  • What is discrimination?

    HIV discrimination is the act of treating people living with HIV differently from those without.

    Discrimination means treating one person differently from another in a way that is unfair – for example, treating one person less favourably simply because they have HIV.17

    While stigma is sometimes hard to pin down (as it is found in people’s attitudes or beliefs), discrimination is a little easier to describe: it is about actual behaviour.17

  • What does stigma and discrimination in healthcare settings look like?

    "I had to go to hospital – It was a planned caesarean and I suddenly worried, 'Am I going to be stigmatised? What is going to happen? Is my baby going to be given her zidovudine on time?'"18

      

    Not everybody living with HIV experiences stigma or discrimination when receiving medical advice or treatment, but it is still worth feeling prepared and empowered, just in case it ever happens to you. You could also ask your HIV clinic to speak to other healthcare professionals on your behalf if you are worried about experiencing stigma.

    Stigma and discrimination in healthcare can show itself in different ways. It could be a judgemental comment that leaves you feeling ashamed, or in extreme cases, additional ‘special’ fees, end-of-the-day appointments or a complete refusal to treat you because you are living with HIV. As a person living with a chronic health condition, it is your right to be treated without judgement and with the same level of respect and care as any other patient.

    A quarter of people living with HIV reported experiencing some form of discrimination in healthcare.19

       

    Stigma and discrimination can also have a direct impact on your health and wellbeing. People who experience stigma and discrimination in healthcare settings are more likely to have breaks in care or poor treatment adherence, increasing the likelihood of drug resistance.14

    Here are some examples of HIV stigma and discrimination in healthcare:14

    • unnecessary delays in treatment
    • differential care (e.g. avoiding physical contact, separation and/or prevention of vertical transmission services from other parental and child health services)
    • conditional care (e.g. granting access to antiretroviral therapy only on the condition of condom or contraception use, stopping the use of recreational drugs, conversion therapies)
    • offering misinformation or wrong advice due to a lack of knowledge (e.g. regarding a person’s ability to have children, U=U, infant feeding, HIV and menopause, drug-to-drug interactions, hormone replacement therapy)
    • neglect (e.g. withholding food, or water, or restricting access to hygiene facilities)
    • refusal of service
    • asking questions that are not related to the reason for healthcare (e.g. asking how you contracted HIV when seeking dental support)

    Stigma and discrimination might also be expressed in the way a healthcare professional speaks or treats someone. Examples of this are using judgemental language, testing for HIV without consent, taking unnecessary precautions (e.g. double-gloving, wearing masks), or breaching confidentiality (e.g. sharing your status with a family member without your consent).14

    "I think the worst one was when I changed consultants for dermatology. The person read the letter which said, ‘HIV positive’. As soon as they saw that, they said they were not going to touch me."20

      

    Overcoming stigma and discrimination

    Being the victim of discrimination can be an upsetting and even humiliating experience. It can dent your self-confidence and erode your trust in healthcare professionals. It is important to remember that no one deserves to be treated badly because of a health condition. In most countries, this type of discrimination is unlawful.

    If you feel you have been treated unfairly because of your HIV by a healthcare professional, here are a few things you can do:

    Reach out to others

    You don’t need to go through this experience alone. Opening up to a trusted friend or family member about a negative experience is not always easy – but it can be the first step to feeling better. Your local HIV support group could provide the safe space you need to share your experiences with other people who understand what you have been through.

    Speak to your HIV healthcare team

    Your HIV healthcare team is here to support you. They will also be able to provide advice about making a formal complaint to the relevant health service should you wish to.

    Know your rights

    Under international human rights law, discrimination on the basis of HIV status, sexual orientation, sex, gender identity, health status (including drug use) or sex work is a human rights violation.21 If you want to take the matter further, your HIV support group may be able to put you in contact with specialist legal services that can advise and support you through the process.

    Know the facts about HIV

    Finding out the facts about HIV can help dispel the outdated ideas some people have about what it means to live with HIV today. Many people living with HIV also find the message of U=U very empowering.

    Look after yourself

    Taking care of your mental health is an important part of living well with HIV. If your emotional wellbeing has suffered as a result of your experiences or because of how you are feeling about living with HIV, speaking to a counsellor can help you make sense of things. Your HIV healthcare team or local support group will also be able to provide more information.

    Eliminating the negative attitudes and behaviours towards people living with HIV globally is a big challenge but progress is being made. With education, training programmes and sharing the empowering message of Undetectable=Untransmittable, we are dedicated to stopping stigma for all people living with HIV.

NP-GBL-HVU-WCNT-220014 | October 2023

Choosing to share your HIV status
Sharing your HIV status

WHAT'S NEXT?

What does ‘healthy’ mean to you?

What does ‘healthy’ mean to you?

There was a time when HIV care focused solely on suppressing the virus. As HIV care has evolved, ensuring a good quality of life for people living with HIV is now just as important as effective HIV treatment and care.

Discover more

Thinking about your long-term health

Thinking about your long-term health

Having a long, healthy life should be achievable for most people living with HIV today.22 This may mean that your health and treatment needs change over time.

Discover more

How to talk to your doctor about HIV

How to talk to your doctor about HIV

Working together with your healthcare team to understand what's going on within your body may be the best way to get the most from your HIV care.

Discover more

References:

  1. Avert. Sharing your status. Available at: https://www.beintheknow.org/living-hiv/understanding-and-sharing-your-hiv-status/sharing-your-status. [Accessed January 2023].
  2. Avert. What is an undetectable viral load? Available at: https://www.beintheknow.org/living-hiv/hiv-treatment/how-hiv-treatment-works. [Accessed January 2023].
  3. Avert. Sharing your status with a partner. Available at: https://www.beintheknow.org/living-with-hiv/understanding-and-sharing-your-hiv-status/sharing-your-status-partner. [Accessed January 2023].
  4. National Aids Trust. Your voice. A guide to disclosure. Available at: https://www.nat.org.uk/sites/default/files/publications/YourVoice.pdf. [Accessed January 2023].
  5. HIV.gov. Talking about your HIV status. Available at: https://www.hiv.gov/hiv-basics/hiv-testing/just-diagnosed-whats-next/talking-about-your-hiv-status. [Accessed January 2023].
  6. HIV.gov. HIV treatment as prevention. Available at: https://www.hiv.gov/tasp. [Accessed January 2023].
  7. NAM Aidsmap. Do you have to disclose your HIV status to an employer? Available at: https://www.aidsmap.com/about-hiv/do-you-have-disclose-your-hiv-status-employer. [Accessed January 2023].
  8. NAM Aidsmap. Telling healthcare workers you are living with HIV. Available at: https://www.aidsmap.com/about-hiv/telling-healthcare-workers-you-are-living-hiv. [Accessed January 2023].
  9. Terrence Higgins Trust. Travelling with HIV medication. Available at: https://www.tht.org.uk/hiv-and-sexual-health/living-well-hiv/your-rights/travelling-hiv/travelling-hiv-medication. [Accessed January 2023].
  10. British HIV Association (BHIVA). Travelling with medication: statement from British HIV Association (BHIVA) and National AIDS Trust (NAT). Available at: https://www.bhiva.org/travelling-with-medication-statement-from-BHIVA-and-NAT. [Accessed January 2023].
  11. National Aids Trust. Your rights. A guide to human rights and HIV. Available at: https://www.nat.org.uk/sites/default/files/publications/YourRights.pdf. [Accessed January 2023].
  12. Murungi A, et al. Experience of living with HIV: Diagnosis & Disclosure – findings from the Positive Perspectives study. Presented at the IAS Conference on HIV Science (IAS 2017), 23 26 July 2017, Paris, France. Available at: https://www.natap.org/2017/IAS/IAS_69.htm. [Accessed January 2023].
  13. ViiV Healthcare. The Positive Perspectives Survey Report. A view into the lives of people living with HIV. Available at: https://edgesuite.gskstatic.com/Viiv/viivhealthcare/pdf_files/master/main/positive-perspectives-survey-report-finalcompressed.pdf. [Accessed January 2023].
  14. UNAIDs. Evidence for eliminating HIV-related stigma and discrimination. Available at: https://www.unaids.org/sites/default/files/media_asset/eliminating-discrimination-guidance_en.pdf. [Accessed January 2023].
  15. National Health Service. HIV and AIDS. Available from: https://www.nhs.uk/conditions/hiv-and-aids/. [Accessed January 2023]. 
  16. NAM AIDSMAP. How likely is mother-to-child transmission of HIV? Available at: https://www.aidsmap.com/about-hiv/how-likely-mother-child-transmission-hiv. [Accessed January 2023]. 
  17. NAM AIDSMAP. What is discrimination? Available at: https://www.aidsmap.com/about-hiv/what-discrimination. [Accessed January 2023].
  18. Academic Medical Education. ViiV Symposium: 4 Women: 4 Seasons of Stigma. Available at: https://academicmedicaleducation.com/meeting/international-workshop-hiv-women-2022/video/viiv-symposium-4-women-4-seasons-stigma. [Accessed January 2023].
  19. UNAIDs. Confronting discrimination. Available at: https://www.unaids.org/sites/default/files/media_asset/confronting-discrimination_en.pdf. [Accessed January 2023].
  20. National Aids Trust. Real stories. Available at: https://www.nat.org.uk/dermatologist-discriminating. [Accessed January 2023].
  21. UNAIDs. HIV and stigma and discrimination. Available at: https://www.unaids.org/sites/default/files/media_asset/07-hiv-human-rights-factsheet-stigma-discrmination_en.pdf. [Accessed January 2023].
  22. Avert. How HIV treatment works. Available at: https://www.beintheknow.org/living-hiv/hiv-treatment/how-hiv-treatment-works. [Accessed January 2023].

NP-GBL-HVU-WCNT-210084 | May 2023

Reporting of side effects

If you get any side effects, talk to your doctor, pharmacist or nurse. This includes any possible side effects not listed in the package leaflet. You can also report side effects directly via the Yellow Card Scheme at www.mhra.gov.uk/yellowcard or search for MHRA Yellowcard in the Google Play or Apple App store. By reporting side effects, you can help provide more information on the safety of this medicine.

If you are from outside the UK, you can report adverse events to GSK/ViiV by selecting your region and market, here.