WHY WOULD YOU NEED A SUPPORT GROUP
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.'
One way of gaining support is to tell family and friends about your HIV diagnosis. But revealing your HIV status is not straightforward and you may not always end up with the support you need (see 'Secrecy and telling people'). 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 (see 'Resources' section). People found out about support groups from friends, the Internet, health professionals, other people with HIV and from advocates at hospitals.
Secrecy and telling people
People tell others about their HIV in different ways and at different times. The desire to keep the diagnosis secret can be very powerful - one man even briefly thought about suicide as a way of avoiding having to tell people. Another man said, 'I'm used to keeping secrets. I do that all the time… It's a private matter and I view it like that.'
A few people come to the decision to be more public about their HIV. Indeed, appearing on the Healthtalkonline website is a way of going public. One woman told everybody about her HIV status so that people could not gossip about her. She also felt powerful' 'Because I get people off guard.' A few people who had retired from work found they could also be more open about their HIV' 'Leaving work does empower you,' said one man. Some gay men noticed that telling others about their HIV status was like 'coming out' all over again' 'Coming out as positive is actually as difficult, if not more difficult, than coming out as gay.'
People said you should consider some of the following things before telling others about your HIV status'
Delaying your decision to tell others about your new diagnosis gives you time to adjust and prepare to deal with any consequences. Some people also used this time to prepare, or educate, the people they were going to disclose to.
People said you need to examine your reasons for telling people about your HIV'
· What will you get out of telling this person?
· What could you gain, and what could you lose?
Some experiences of telling people Testimonials
"Some people told others about their HIV diagnosis immediately' 'Immediately I was on the phone to everybody telling them… it was a gut reaction… It was difficult for me to accept the fact that I was now a patient and not a member of staff,' said one health professional. But some of these people wished they had not rushed into it, since you can't then 'un-tell' people."
"People can find it hard to keep their HIV secret. It takes a lot of work to hide your medication and cover your diagnosis up, particularly when you are feeling emotional. Some people get to a point where they just have to tell someone else' 'I just couldn't contain it any longer,' said one man. But these people said that you still need to be careful who you tell (see 'Skills in telling people' above). One man put it this way' 'I think still be careful about who you talk to, but find someone you can talk to… Somebody to hug, a shoulder to cry on and someone who will listen to you is important.'"
"A few people we talked to felt they had been forced to disclose. One woman's sister had found out from hospital staff. A man said his work colleagues found out about his HIV without his permission. Another man said his clinic 'Insisted that the GP really ought to be informed, so I signed a consent form rather grudgingly and the GP was informed.' Another man who lived in a village outside of London had his diagnosis splashed over the front page of the newspaper following a car crash in the 1980s' 'Ambulance men in AIDS scare,' said the headline."
"That was one of the most difficult days in my life, in sitting down and explaining to my brother and my parents' because one of the reasons I didn't want to tell my parents was that A. there was nothing they could do for me and B. they would only worry about me, that I was going to die and a parent doesn't want, actually want to hear that, that one of their children is seriously ill. So, after I did that, a week later the nurse came to take my stitches out. And she brought a letter from the managing director that said basically, 'Sorry yeah to hear about your accident but you've caused a little bit of disquiet within the company and before we consider whether we can let you back to work we want you to go and see the doc, the doctor.' I thought shit, they're going to get rid of me, I'm going to lose my job. How am I going to pay the mortgage, just bought this house, so how am I going to pay the mortgage? Who's going to employ me? You know things had taken a nosedive and that was probably the same time I thought about suicide as an option. You know that I couldn't see a way out of it you know."
"Friends, partners and family were sometimes supportive, even if upset at first' 'Knowing that you have support, it's the best medicine,' said one person. But black Africans were usually cautious about telling their loved ones because of the stigma that surrounds HIV. Some people who told others about their HIV felt like targets of strong emotion or were even rejected' 'That was the beginning of the break-up of the relationship,' said one man. Some people were mistreated by family members who they told or suffered from gossip about their HIV status' 'News can spread like wildfire.' One man said, 'Even if you think you can probably trust them on the surface, you have to think about well, what are they going to be like if they do have a bad reaction? Are they going to go around telling everybody?' Sometimes partners, friends and family had different ideas about who else should be told. These people may want to be more secretive (or more open) than the person with HIV."
"I mean I think one friendship that suffered was probably ill-fated anyway. But one non-sexual friendship suffered. This particular friendship suffered because my friend was very distressed that I had left it a month to tell him. That I hadn't shared. Which I can understand actually. That I hadn't shared my initial shock, horror, numbness, whatever, with him. And hadn't felt that I'd been able to pick up the phone. Maybe that he hadn't been the one that I'd told on that first day. And got to come down with me. And meet me. And take me out afterwards and whatever. So… But That actually was very difficult to… The, the sort of… I suppose, in a way… I mean retrospectively the acknowledgement that that friendship may not have been all I thought it was anyway."