HIV

HIV Support groups

Isolation
An HIV diagnosis can be very isolating, as people frequently cut themselves off from the world when diagnosed with HIV. But the advice from the people we interviewed is that isolating yourself 'makes it worse'. 'It's no good to sit at home. It's very stressful,' said one person. 'When you are home alone, you will be thinking that I am the only one who is having HIV', said another. People also linked isolation to poor health, depression and even suicide' 'Yes it is damaging. You get depressed.'

Getting support
One way of gaining support is to tell family and friends about your HIV diagnosis. But revealing HIV status is not straightforward and you may not always end up with the support you need. Going to a support group for people with HIV is a more reliable way of getting support. Support groups can be particularly useful for people feeling vulnerable or anxious because of ill health, lack of confidence, immigration, poverty or being unable to work. While black African people particularly valued support groups, the people we talked to did not always know what a support group was, how it could help them, or where to find one. People found out about support groups from friends, the Internet, health professionals, other people with HIV and from advocates at hospitals.

If people could not afford to attend, their clinics and HIV organisations sometimes help with taxi and bus fares.

A support group can be crucial to the well being of newly diagnosed people and those who are ill.

For the most vulnerable, support groups can make all the difference to building of confidence and strength.

Some people said that getting social support from others with HIV was THE most important thing you could do to help yourself. One woman believed that advice from a woman in an African HIV support organisation in the early days of her diagnosis actually saved her life' 'I am not going to die, because of what that lady was giving me.'

A key way that social support groups help people is to challenge the idea that 'HIV = death'. In doing so, support groups help build confidence and strength. It can be hugely inspiring if people can see other people who are 'in the same boat' doing well. Many people described being amazed that people with HIV can be so healthy. Experienced people in groups sometimes tell their own stories to help build the confidence of newcomers. People come to see other HIV positive people in groups as role models, and this can motivate newcomers' 'And you see somebody else doing very well right. And you think how did she manage it?' People then share ideas on how to solve their problems and 'move on in life.' It is vital for people to see that others diagnosed with HIV can manage their HIV and live well.


A number of people actually felt they recovery from ill health by seeing how others had made it' 'I picked up, I even put on weight from there . When I came back, even my doctor said "you have changed".' Support groups and organisations help people in many ways.
  • They can allow people to talk freely and express their feelings and concerns in a safe situation.
  • People make friends in groups, allowing you to call on help and support when the group is not running. People who are excluded by their community can recreate 'family' and community networks through support groups' 'And then when you go home, it is like you have something behind you, supporting you.' One man took this idea further and said that people with HIV should see themselves as a 'nation' of HIV positive people.
  • You can attend workshops, get advice and new skills e.g. negotiating safe sex, relationship skills, treatments, dealing with discrimination, immigration, prosecution for transmission, how to manage your HIV and side effects.
  • Groups provide structure for your life' 'Keeps me in a routine of doing something once a week.' This is particularly important for people who are depressed or feel 'stuck' e.g. because of immigration issues' 'It gives you a reason to get out of the house and to be with other people.'
  • You can get a referral e.g. for counselling or to a solicitor who can assist with immigration issues.
  • You can get practical help e.g. computer training, hardship money for essentials like food, help with transport, help with contacting professionals, help with applying for asylum.
  • You can find potential partners who are HIV positive also, although African women say there are less African men infected with HIV in the UK and few who go to groups.
  • People can see that there are people better and worse off than themselves, and being somewhere in the middle can be a comfort.
  • You can share in cultural traditions, such as food, talking in your native language, and discussing your religion.
  • You can socialise for enjoyment e.g. parties, singing' 'When we go there, we socialise, when we socialise we feel a bit happy. And forget the trouble.'
  • You can find out how to join or establish email and online social groups with other HIV positive people to gain support. One man thought that the Internet was useful, 'If somebody was shy, they could get to know people that way.' You can be anonymous in email and web-groups yet still get emotional support.
  • Help with caring for children e.g. through a crèche, or helping people to talk to children about HIV.
  • You can discuss whether you should tell others about your HIV, as well as how to tell others.

Challenges
Support groups are not for everyone. It can be difficult when you see others who are very ill' 'Sure it helped to hear of other people's experiences but I hated seeing different stages of the disease.' Social groups are also a way for people to unload their problems, and so while groups can be uplifting, they can also feel depressing. The dynamics of the group can sometimes be difficult to deal with also (although a skilled group leader can help). For those who are trying to avoid a 'victim role', it can be difficult to be with people in groups who seem to behave as victims. People may also feel uncomfortable in groups with other people who they see as different to themselves.

There are also real limits to how support groups can help people. A number of African participants talked about the effects of limited funding for social support organisations. 'We do so much for so little, and that's quite frustrating.' So support groups can be unstable' opening and then closing because of changes in funding. Since many people are surviving on so little (see 'Dealing with difficulties, finances and benefits'), people also turn to social organisations for financial help.

Getting more involved
Some people get involved in working with support groups or other HIV charities, either as volunteers or paid workers. This can be rewarding, although the work can be difficult' some found the workload and the politics very stressful. Non-HIV charities and organisations also welcome volunteers. All kinds of charity work could help people towards getting paid work when you are ready for work and legally allowed to work. And people getting support from the NASS (National Asylum Support Service) are allowed to do voluntary work.

HIV-related organisations offer more than just support groups, including places for people to 'drop in', information, publications, telephone counselling, referrals to professionals, advocacy, arranging respite care, massage, complementary therapies, training workshops, advice (e.g. legal, safe sex) and practical help.

Terrence Higgins Trust  runs a free course called Learning Plus
- a positive self-management programme (PSMP) which helps by giving tools and techniques to allow you to take control of your health and manage your condition better.

The National Long Term Survivors Group holds several "Living Proof" weekend retreats a year. They run a programme of activities and provide a safe, relaxed place to meet other people who have also been living with HIV and AIDS for five or more years.

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Last reviewed January 2013.

Last updated January 2013.

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