HIV stigma

HIV stigma is when people have negative attitudes and judgements about people with HIV, or people from groups associated with HIV. For instance, if you are gay or trans, use drugs or are just young and sexually active, you might experience HIV stigma, whether you have HIV or not. But anyone can have HIV. It is not just certain groups that HIV affects.

HIV can be passed on through unprotected sex. Mothers with HIV can pass it to their babies during pregnancy, childbirth and breastfeeding (if they don’t take treatment), so some people are born with HIV. It can also be passed on by injecting drugs. No matter how someone gets HIV – it is still just a medical condition – there is no more reason for someone to be shamed for it than if they had caught malaria. It’s not okay to treat anyone badly because of a medical condition.

When the HIV epidemic started, little was known about how HIV was passed on. This made people afraid of people with HIV. But it is now proven that HIV cannot be passed on through things like touching or kissing. And if you are on effective treatment you cannot even pass HIV on through sex. But if people lack this information, they are more likely to have fear and stigmatising attitudes about HIV.

HIV discrimination comes from HIV stigma. It is what happens when people (or society in general) treat people with HIV (or groups linked to HIV) differently to other people.

HIV stigma and discrimination can happen in any area of life, including within romantic relationships, family relationships, friendships, at school, at university, at work, in church or in social settings, even in healthcare clinics.

One of the most dangerous things about stigma is that it makes people afraid to use PrEP or test for HIV and seek treatment.

If someone has HIV and doesn’t know it, they are more likely to pass HIV on. And if HIV is not treated, it will develop into AIDS which can kill.

One of the best ways is to educate yourself about HIV, especially the ways HIV is passed on, and the easy things that everyone can do to prevent HIV from being transmitted. Be in the KNOW has all the information you need about HIV. If you are well informed, you will be able to spot misinformation about HIV. And you will be able to educate other people too.

It is also good to think honestly about your own attitude to HIV. A lot of us hold stigmatising attitudes, and that’s because they are all around us. You may have heard them from family members, in church, at school, from friends, on social media, the radio or TV. The first step is to recognise any stigmatising views you may have, then you can challenge yourself to think differently.

Why not challenge others to think differently too? You can do this by calling out HIV stigma and discrimination when you see it. Just make sure you assess the situation for any risks before you do so. If someone is being treated badly, sometimes just letting them know you are on their side can be enough.

Stigma and discrimination affects people with HIV in lots of ways. If someone is diagnosed with HIV, they may refuse treatment for fear of others finding out. They may also feel too afraid to tell partners, family or friends they have HIV. This can be very isolating. If someone is hiding their HIV status from people they are close to, even if they are on treatment they might struggle to take it properly at the right times. And if they are not using HIV prevention, their partner will be at risk.

If you have HIV, you might find that you stigmatise yourself. You might feel you are somehow 'dirty' or 'shameful' and that you don’t deserve to have things that other people do, like a partner, children, friends or work. This is HIV stigma talking, it is not the truth.

If this sounds familiar, it’s time to get help rather than suffering alone. HIV is a medical condition, it is not a punishment. Millions of people have HIV and lead healthy and happy lives – and you deserve to as well.

Sometimes, HIV stigma means some health providers might treat you badly or refuse to treat you for other health issues. If this happens to you, do not put up with it. You have a right to healthcare, just like everyone else, and there are plenty of friendly clinics out there.

One of the best ways to cope with HIV stigma – whether it is coming from others or from within – is to look after your mental health. Take a look at our tips on the many ways you can support your mental and emotional wellbeing.

If you have HIV, it is also really important to understand more about HIV treatment so you can be in control of your health and start making plans for the future.

As the first step to ending HIV stigma is to know the facts, why not start by learning how to prevent HIV and how to test for it?

Condoms, PrEP and U=U are all tried and tested prevention methods. Condoms are fairly easy to get hold of and they don’t have to kill the mood either.

HIV self-testing can be done in private, or you can test at a friendly clinic (for instance if you are gay and worried about going to a standard clinic

If you have experienced HIV stigma, you are not alone. Here is what other young people have told us about HIV stigma and how they deal with it.

“I used to ask God why [do I have HIV]? I stigmatised myself… This journey is tough and you need to have support. My friends really went out of their way to help me... Today HIV is not a big deal to me. I can take my medicine in public and I am healthy. If you fight stigma and denial within yourself first, it's very easy to live a positive life.” – Read Makena’s story

“Being open about my HIV status is really important to me and has given me relief, because I don't want to keep it a secret anymore. There’s no shame. I’m a normal man and I didn’t do anything wrong…I want to use this opportunity to encourage people living with HIV and let them know that having HIV is not a death sentence, and even if they face stigma at their place of work, or face rejection from friends or families, they should be strong, because there is more to life.” – Read Talent’s story

What to say:

• HIV is just a medical condition, it is not a punishment for immoral behaviour.
• Anyone can get HIV, it is not only certain groups.
• The more we blame people for having HIV, the fewer people will test for it and go on treatment if they need it. And that means HIV will keep spreading.
• With the right treatment, someone with HIV has the same life expectancy as people without HIV.
• As long as people with HIV can get treatment they can live a healthy and full life, just like anyone else.
• People with HIV are just people, and they should be treated with respect.

What to say:

• HIV testing is nothing to be afraid of. It is the best way to look after your health, and it is easy to make it a regular part of your life.
• If you are diagnosed HIV negative, take it as a reminder to use (or keep using) HIV prevention in the future. And if you have HIV, the good news is you can start treatment straight away. This will keep you healthy. And if you take your HIV treatment properly, it will stop you passing HIV on through sex.
• If you’ve got HIV and you don’t get tested, you will still have HIV. But instead of getting treatment and getting on with your life, you will be putting your life at risk – as you may develop AIDS. You’ll be putting your sexual partners at risk too.
• It’s normal to feel worried about taking an HIV test, but the benefits far outweigh the reasons not to.
• Everyone who is sexually active should test for HIV, regardless of sexual orientation, whether you have many sexual partners, or use drugs.
• It is a good idea to test for HIV even if you are in a committed monogamous relationship. It can be something you discuss with your partner and both agree to do.

What to say:

• Using HIV prevention shows you are looking after your health and that you care about the health of your partner. This is something you should be proud of.
• Everyone who is sexually active should be using HIV prevention. There are various options including external male and internal female condoms, and PrEP.
• There is nothing immoral about having sex or using HIV prevention.

What to say:

• You are not alone, I am here to listen and I am not here to judge.
• Lots of people have HIV, and it is nothing to be ashamed of.
• It may feel daunting but when you are ready it can help to tell those close to you about your status.
• Feeling shock, anger, guilt or blame is normal. But you are not to blame, HIV is not a punishment.
• If you recently found out you have HIV, the first step is finding out more about what you can do to look after yourself. You will have HIV for life, but that life can be a full and happy one.
• Treatment can keep you healthy and stop you from passing HIV to anyone else. You can still have a fulfilling sex life and you can still have healthy children.
• There is lots of support out there to help you if you are feeling bad, or you are being treated badly by others.