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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.

 

After an advocate visited her in hospital and helped her join a support group, she was motivated...

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Age at interview: 51
Sex: Female
Age at diagnosis: 47
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Especially myself, I remember, I stayed for 5 months in hospital. The last hospital where I went, there was this lady who came to visit me, she was coming from a support group. She talked to me about this support group and things like that, but I didn't understand what she was talking about. 

So the next day she told the nurses to invite me for the next support group. So the hospital hired a taxi for me to go to the support group. I went there and saw very fit people. And I thought, how could they take me to such a place? Are all these people… are they HIV positive? And I couldn't believe it myself. 

I went back to the hospital and I said, 'I think you sent me to the wrong place'. They said 'no, no, no it was the right place'. 

So on my discharge from hospital, this lady from that support group came to visit me and she always used to send me a taxi. And that is when I started to see… talking to those fit people, speak to people, how they are managing. 

And all of a sudden people were shocked about my recovery. In my life. All of a sudden I started to improve. Because I was looking at the fit people and saying I want to be like her. How come she is so fit and I am still thin? What is happening to me? Even asking some of the people what type of food are you eating which is making you healthy?

 

After an advocate visited her in hospital and helped her join a support group, she was motivated...

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Age at interview: 51
Sex: Female
Age at diagnosis: 47
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Especially myself, I remember, I stayed for 5 months in hospital. The last hospital where I went, there was this lady who came to visit me, she was coming from a support group. She talked to me about this support group and things like that, but I didn't understand what she was talking about. 

So the next day she told the nurses to invite me for the next support group. So the hospital hired a taxi for me to go to the support group. I went there and saw very fit people. And I thought, how could they take me to such a place? Are all these people… are they HIV positive? And I couldn't believe it myself. 

I went back to the hospital and I said, 'I think you sent me to the wrong place'. They said 'no, no, no it was the right place'. 

So on my discharge from hospital, this lady from that support group came to visit me and she always used to send me a taxi. And that is when I started to see… talking to those fit people, speak to people, how they are managing. 

And all of a sudden people were shocked about my recovery. In my life. All of a sudden I started to improve. Because I was looking at the fit people and saying I want to be like her. How come she is so fit and I am still thin? What is happening to me? Even asking some of the people what type of food are you eating which is making you healthy?

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.

 

Talks about how he encouraged another African man to attend an African support group. (Read by an...

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Age at interview: 40
Sex: Male
Age at diagnosis: 35
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When I went to the hospital I found one guy who had been diagnosed. Me at first I was thinking that he's all mad, he has run mad. Anyway, when he was approaching to me, I used to take some steps back, you know, because to me I was, I, I was thinking that he's mental... 

He said... and he said to me that... now, 'I wanted these, these doctors it seems they are not… they don't know what they are supposed to do. Now they are saying to me now I'm HIV positive.' He couldn't, him, he couldn't trust the doctors, and he couldn't believe he's HIV positive. 

'Cool down my friend,' I said. 'Calm down. You see me here, I'm HIV positive.' He started anyway looking to me from... 'Are you?' he said. 'Yes,' I said. 'OK,' he said. Now I said, 'If you want to get another advice, I can take you to another place where you can get more advice.' He said, 'What is your telephone number?' I gave it to him. 

Then, by then we are still… we had a African day, it was every Saturday in this little place. I brought him here to the place. Many people, very many there, he said to me, 'Are all these… are all people here HIV positive?' 'Yes,' I said. He said... he said, 'Are you sure?' I started taking him all around these places... this one, that one. He started anyway reading, reading, more reading. And now anyway he, now he… now he's grown in confidence. We are all friends now. All friends.

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

 

Explains how African men's support groups can play a 'magical' role in building men's confidence...

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Age at interview: 45
Sex: Male
Age at diagnosis: 40
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And this is one funny thing I've found, men tend to, to sort of look to their peers. So that's where the, the likes of a support group plays a very magical role basically. Because we do tend to get men who perhaps… I mean I've met men who come to our support group who, who are not sure what is next. 

But when they come to sort of the group, where there are other men, you know, they tend to treat that forum more or less like… it can be a religion. You know peer support, some kind of… so that's where they get strength… I mean, when you are a man or a boy in African setting, you know the, the men's club is really a cultural thing… that's where men get their own power, their, their, their inspiration, from their own groups. 

And I think it, it… it, strangely enough, it seems to work quite well in the, you know even here (UK). Because even, you know when you meet men if the men are free then… If you go to a mixed group, where women and men are mixed, men are even shy to talk about their sexuality. How they feel about women. But where they, when they are together, they are very free to talk about sexuality, use of condom and all.

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.'
 

Believes that getting support from other people with HIV is the best way to help yourself.

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Age at interview: 37
Sex: Male
Age at diagnosis: 24
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For me the most important thing is peer support. That is why I am doing this now, because I believe that other people's experiences are the key to finding out what you need to do for yourself. I've gone to therapy, I have done personal development seminars, but the thing that really help me most was being in different kinds of support groups where people who had been through the same experiences talked about their experiences. And talked about ways that they had found to get out through the other side and feel OK about themselves. So peer support was the main thing for 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.

 

Was delighted to find that other women with HIV she met in a support group were healthy and not...

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Age at interview: 49
Sex: Female
Age at diagnosis: 47
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In my own experience, when I was first diagnosed, the first week few weeks were hell. I was thinking what was happening back home (in Africa) when someone is HIV positive. My GP just kept… he encouraged me to go and meet others. But I was very shy. I didn't even want to meet any people from my country. But the day when I actually got the courage and went there (a support group) I was shocked. 

I met the most beautiful ladies, you know looking nice, no skin rash - nothing. I thought they would be very skinny, skin problems, you know dying really. But I was shocked. I remember I talked to some ladies they told me I have been taking this for 10 years, 17 years. I said, 'What!' I thought I was going to die, you know six months I will be dead. They said no it's nothing like this.


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.
 

She visits a number of HIV support groups and this helps her to get training, keep informed and...

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Age at interview: 30
Sex: Female
Age at diagnosis: 29
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Yes and they also encourage us to try and go and do some of the training that is being offered like. Right now when I came into this country I was quite illiterate computer wise. So I just started doing my computer training levels 1, 2, 3… so I'm 3 weeks old going to college so far. 

So, that's part of what I am… I have benefited from joining these other groups. And the groups also come as a family. You, you… the more people you have, you have got now a, a horizon, a bigger, a wider horizon, diverse… So you've got a diverse… a whole group of people who you are connected to. You are very… we are well networked. 

So if you need information, you need something about other countries, about even your own country, anything you can always phone around and talk. And it's also good for… for support. Because sometimes you feel down and you don't feel like yourself. So if you talk to this one, I've got this problem, they can call you back, they can talk to you. Some can even advise you to go for counselling here and there so… It's, being a member of many groups is quite beneficial.

  • They can allow people to talk freely and express their feelings and concerns in a safe situation.
 

Support groups can help with the free discussion of difficult topics and expression of feelings. ...

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Age at interview: 63
Sex: Male
Age at diagnosis: 51
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Yes, in a support group we are all of a kind, sort of, all have the same problem. And you realise that the pains you are having, others are having it too you know. Physical pains, emotional pains you know. And you tend to share your problems, you know. You feel well, I'm not alone. And that some are even worse off than you, you know physically and mentally too. 

So that is where the help came from and even medication we talk about medication, how you cope and what you do. You know different, different things that you, you don't have time to ask your doctor about that sort of idea. And you feel free, you know you feel free this is… we are the same, it doesn't matter whether you're from U, Ukraine or from Scotland…. That was big help, big help you know. 

And I was talking about my family break up and someone was telling me about his parents actually disowning him you know these sort of things so that, you can see that you're not alone.

  • 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.
 

Support groups can replace communities for Africans and help people to see a future. (Read by an...

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Age at interview: 32
Sex: Male
Age at diagnosis: 27
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You see as far as we are concerned the, we, all of us have got some communities which are like blood related who are living here in the UK. But because of the situation, you find some of us are really rejected in those communities. So the only way to console yourself is to attend this new group and this can… becomes your community. And when you are in it, you feel happy. So you share experiences and, and... as the disease is still new, now most of us realise this thing. 

When we… so many people die, and the way people have died, we thought that at one time that we would go through that kind of thing. But with the help of other people who have gone through, who have lived longer with the situation than you, you get ideas from them and think it's OK, I am going to live longer. 

If somebody comes and say oh I've lived for 20 years on this, but if you… for example if you have only known you have this one for three years you say OK, I still have another 17 years to, to live, and you know. Then you become happy.

Sometimes even you forget about this thing now you, you continue with your normal life.

 

When he visited Aids orphans in Africa he thought about how HIV positive people could come...

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Age at interview: 38
Sex: Male
Age at diagnosis: 35
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These, it's like now these children they are almost about, almost 50, 60 of them. No fathers, no mothers. When I saw these kids I thought who have they got to run to and say, daddy I want this, mummy I want this? These kids parents died because of that HIV disease, Aids… Why can't you just donate even a penny or pound or, you know for these kids, so these kids can have future, these are our kids, the HIV people, as we want to call ourselves, these are our kids. 

Because these are our… our friends, brothers, who died leaving these kids… they've got no school some of them they never been to school, they are… who's going to run the country, who is going to look after these kids? If we are all going to sit and die because we are HIV, we just sit back, who's going to… who's going to run the country, who's going to drive buses? 

We still got our heads and feet and eyes and brains to think. So which we've all just... try together and be one, one nation. I think the world would be better for HIV 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.
 

Attending a support group helped her to see that a painful condition was actually a relatively...

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Age at interview: 33
Sex: Female
Age at diagnosis: 27
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And it really got bad when I said I had an in-grown toenail, which I did have. And for a long time I didn't know it was an ingrowing toenail, and that's one of the reasons why attending groups were really useful to me. Because we used to have doctors come in to talk about side-effects and people would come and say I've got this, I've got that, and we'll compare side-effects. 

It was only when I came with the bad toe and I was limping a bit and I couldn't wear covered shoes that people said, 'Are you taking Indinavir?' And I said, 'Yeah.' That's what it is, that's what's causing it. In growing toenails, it does, yeah. The nails, instead of growing outwards, they can grow back in and it's very, very painful. And it won't stop doing that unless you stop taking the medication.

  • 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.

 

Support groups are not for everyone all the time. (Read by an actor.)

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Age at interview: 30
Sex: Male
Age at diagnosis: 27
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But actually, to be perfectly frank, it wouldn't be everyone's cup of tea. And I know from speaking to a couple of people who'd been and not gone back that it isn't everyone's cup of tea. Because it's sometimes so fucking miserable. But I mean actually what that group did to me was it made me think thank fuck. You know, there's so many people worse off than me. 

It wasn't the place to be when I was needing to sit down with somebody one-on-one. Because I didn't feel, at the time, I couldn't get a word in edgeways. And I was a new member of a group. There were some quite opinionated people there. But actually for various reasons I just think… I'm not sure whether it's the sort of… I think it's the sort of place to go when you're sort of feeling very neutral… 

Because if you're feeling too sad it can drag you down. Unless you really have to get something off you chest. And if you're feeling too happy, why put yourself through the misery of people sort of saying, 'Oh God, I can't believe…' You know, because you… It can be quite demanding sometimes. When people use a forum that, you know… to really vent their personal, personal, personal grief, angst. And that's what it's… of course what it's there for.

 

There were divisions in his support group as a result of 'victim' mentality. (Read by an actor.)

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Age at interview: 40
Sex: Male
Age at diagnosis: 37
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And it's odd. The, the group's virtually divided into… The, the group is divided down the middle between people who are getting on with their life, and other people who just put their lives on hold. And… I just want to shake some of these people. I think that there are some people who are natural victims. They will look for a reason not to get on with life. 

They… And there are other people who will look for a way round a problem. 'My life's a disaster. I haven't got anywhere. It's because I'm positive.' I mean there's half of us end up giggling. And the other half sit with faces like smacked arses [laughs].

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 has a number of online services which help 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.

 

Talks about the range of things that his local HIV charity does to help people.

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Age at interview: 35
Sex: Male
Age at diagnosis: 31
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They help with just getting letters together, liaising, just basically anything that you go to them for. I mean financial help, even, if you need it. Just all sorts. They put you onto Cruisaid for grants, or' just daft things. If' I mean they keep saying to me, if I've got no motivation, which I didn't have like a year ago, if I need to go somewhere, just phone them. And they'll send me a taxi. I can get a contract taxi. But I won't take the piss like that. I just won't do it. You know. I'm sort of too, too hard-headed and independent for that, you know. I'd rather walk than get a free taxi. I just [laughs]' you know. But they do all sorts, you know. Just support really. Advocacy. Office based, I can even go and use a computer there if I need to. Use their offices. Just lots' They just do lots, really. They just' And phoning for counsellors, so that' And they're going to start doing alternative therapies, massage, that sort of stuff.

Last reviewed May 2017.

Last updated May 2017..

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