The stigma associated with HIV has a high cost at both a community and individual level.

The community

For a start, stigma can make preventing HIV transmission more difficult. People at risk of HIV can be so fearful of any association with it that they deny any possibility that they could be at risk. This can mean that they don’t educate themselves or take steps, such as using condoms when having sex, to protect their own or other people’s health.

The stigma associated with HIV in many high-prevalence communities can also mean that people in those communities are unwilling to have an HIV test. It is known that about a third of all HIV in this country is undiagnosed, and that roughly 25% of people at the time of their HIV diagnosis have had HIV for many years. Unaware of their own infection with HIV, many of them will have infected others. Some people have their HIV diagnosed so late that they are seriously ill because of HIV and have such weak immune systems that they need to start anti-HIV treatment immediately. In addition, some women are only diagnosed with HIV during the final stages of pregnancy or even during or after childbirth, and as a result will not have been able to fully benefit from interventions to prevent mother-to-child transmission of HIV.

What’s more, unchallenged stigma can also lead to people known to be infected with HIV being isolated, discriminated against, excluded or victimised by their own communities. In such situations the community fails to acknowledge that HIV is an issue that it needs to confront, which just reinforces the stigma. And it means that HIV-positive members of those communities are denied acceptance, support and love when they need it most.

Stigmatising yourself

On a more personal level, the stigma related to HIV can sometimes fundamentally undermine your sense of yourself.

Mainstream prejudices about being gay or African may seem to be confirmed by an HIV-positive diagnosis. Finding out that you have HIV may also cause you to think differently about yourself – and possibly even to form a new self-stigmatising identity as someone who is blameworthy, sick, unproductive, and a potential health risk to others. It’s important to remember that HIV is just an infection. It isn’t a moral judgment or a punishment given to you because of who you are or what you did – it’s just a virus that has evolved to be transmitted in particular ways.

It is really important to forgive yourself for contracting HIV and to accept that you are now living with the infection. For some people this can be a long and emotionally painful process and it is likely to involve confronting some deep-seated negative feelings that you have about who and what you are. Many people find that support groups or counselling on either a one-to-one basis or part of a group helpful.  Your HIV clinic may be able to offer counselling and THT Direct (0845 1221 200) will be able to give you information about counselling services and support groups in your area.

Going to your HIV clinic can be one of the occasions when you need to think about what having HIV means for your self-identity. It can be an unnerving and unsettling experience. At the very least, it involves a whole new set of experiences and can also involve concerns about being recognised by people who will then realise that you have HIV. What’s more, you’ll also have to interact with other HIV-positive people. Although some people find this empowering, others find that it can be unsettling. You may be concerned about seeing people who are ill because of HIV and this might cause you to think about the way the virus might affect your health in the future. Or it could be that experiencing other people with HIV leads you to think about your own preconceptions about the “type” of people who have HIV and about how similar, or how different you are to these people.

It’s vital that you receive regular medical monitoring and appropriate care following your HIV diagnosis. Don’t stop going to the HIV clinic because you find it an uncomfortable experience. Instead, try going at a different time of day, or you could ask your partner, a friend or a relation to come along for support. Also remember that you can choose which HIV clinic you attend. There may be another clinic near you where you’ll feel more comfortable, or you may want to consider travelling to a nearby town to attend their HIV clinic.

There are other ways in which self-stigmatising can operate. For example, if you feel that you’re so different from other people, you might avoid socialising and end up isolated, without understanding and support. This will not be good for your overall health. Sometimes people with HIV think of themselves as being “ill” even though HIV isn’t causing them any health problems, and some leave work.

Treatment for HIV is getting better all the time and HIV is increasingly becoming a chronic but manageable illness.

But it can be distressing if your experiences of HIV appear different to the norm. It can be tempting to ask what you’re doing wrong if you’re ill because of HIV when everybody is talking about how good the health prospects are for people with HIV. You might wonder why your treatment isn’t working and be tempted to blame yourself. Or you may be experiencing side-effects which might be quite literally stigmatising, such as the body fat changes (lipodystrophy) caused by some anti-HIV drugs, or other side-effects, such as cardiovascular disease, which involve a whole new set of long-term health problems. You can find out more about these subjects in the NAM booklet, Lipodystrophy.

There are other health problems that can add to a sense of stigma, for example hepatitis B virus, hepatitis C virus and sexually transmitted infections, not least because they can be transmitted in similar ways to HIV and be associated with behaviours such as injecting drug use, unprotected sex and “harder” sex scenes that are sometimes viewed as taboo. You can find out a lot more about these infections in the NAM booklets, HIV and hepatitis and HIV and sex. 

On the other hand, some people, particularly those who became infected with HIV after effective HIV treatment became available, have never experienced HIV-related illness and become upset when people talk about illness caused by HIV, or may even feel guilty that they are in good health when many others have died because of HIV.

Internalised stigma can also contribute to mental health problems, which occur more frequently in people with HIV than the general population. Treatments for depression work just as well if you have HIV and ask for help from your HIV doctor if you are feeling depressed.

Mental health problems are often stigmatised in our society and many people with illness like depression feel too ashamed to seek treatment that could make a real difference to their lives. Don’t let being depressed become another source of stigma. A good place to start to find out about this subject is the NAM booklet, HIV and mental health.