NOTTINGHAM’S ONLY INDEPENDENT
VOLUNTEER RUN HIV PEER SUPPORT GROUP
REGISTERED CHARITY 1129416
Registered Charity 1129416
In the middle of November 2015, Tagadere received a phone call from Radio Nottingham who, after the success of last year’s World AIDS Day interview with one of the Tagadere family, asked if it was possible to interview three HIV positive people who come to Tagadere to ask them about HIV stigma in the light of actor Charlie Sheen’s ‘admission’ that he was HIV positive.
Three people were more than eager to help educate and enlighten on the persistent stigma surrounding HIV.
Radio Nottingham’s Sarah Julian came to Tagadere Wednesday Club to conduct the interviews. We applaud the candid and honest way in which the three people spoke about things which are very personal to them.
We’d also like to thank Sarah Julian and Radio Nottingham for once more considering Tagadere for interviews with local HIV positive people who value the peer support provided by Tagadere and who felt able to speak from the heart, no matter how difficult it was to do at the time and regardless of how much mental preparation was made.
Introduction from Sarah Julian (BBC Radio Nottingham): You might remember over a week ago actor Charlie Sheen, famous for his roles in Hot Shots and sitcom 2 ½ Men and of course son of Martin Sheen…he held a very high-
(Segment played of Charlie Sheen mumbling and stammering; rather theatrically ‘admitting’ that he has HIV.)
Sarah: So there, on telly, revealing that he had HIV and also revealing that he paid millions trying to stop people telling his secret. What’s life really like then when you’re living with HIV? Does the stigma still exist? Do people keep it secret?
In Nottingham, the Tagadere group meet for lunch and they meet for talks and they are the only completely volunteer run HIV peer support group in Nottingham.
I went along to meet them. Kate, Michael and Kevin – not their real names – are all in Nottingham and they’re all HIV positive. Kate explained how she found out.
Kate: I was going out with a boyfriend, he got taken to prison and the prison were doing screening. They then phoned me and advised me to get a test. I got a test, I was HIV positive and I was Hepatitis positive too….so it was a hell of a day.
Sarah: So it felt like a death sentence, did it?
Michael: Well it would have done, it would have done…you are generally told when you are diagnosed ‘Two years’ (background agreement: yeah, yeah) …that was your expected life span.
Sarah to Kate: ..and here we are 33 years on…
Michael: I agree, the crap is still the same. It’s not changed. Over the years people still don’t want to be open about it, generally people don’t..you know, want to know.
Sarah: Kevin, what about you when you were diagnosed?
Kevin: Well it was about 13 years ago…it sort of crept up on me…I wasn’t really aware of the possibility that I could have been HiV positive…but I was starting to get unusual skin rashes…but then eventually some pretty bad headaches started coming up and eventually I started going for a proper assessment and I ended up with a brain tumour. The doctors suggested running a few other tests…and one of them was for HIV…and I was just…just… you know, totally bewildered…I couldn’t, I couldn’t connect with anything from my past that…er, would have led to that. So…
Sarah: So you don’t know how it came about?
Kevin: It…eventually when I started piecing together the history of my life…I dated it back to the 1980s where there was a couple of girlfriends, one of them must have been HIV positive…but it really would have been just like one chance…and…it was just a bit of bad luck.
Sarah: So that was a huge shock?
Kevin: Yeah, yeah, it, it…there was just nothing in my lifestyle that would have led to that. Except that one case. But even now I still find it a bit unusual, even now…to the point where I still look for alternative explanations and like…maybe my immune system was shattered and maybe the cause was something different…I think that’s called ‘denial’…but..um..that’s how surprised I was by the whole thing.
Eventually I got through the treatment and gradually fought my way back to something resembling health…but I wasn’t able to tell anybody…just one person…you know…my wife…the doctors involved… but no other family members..it was just..no..it’s a no-
Sarah: …and your wife? What was that like for her?
Kevin: Umm…she was as shocked as me. She is unaffected by the illness and…
Sarah: So she had a negative test then, did she?
Kevin: She had a negative test
Sarah: Must have been a relief
Kevin: It was a relief in some ways because…erm.. whatever I was responsible for I wasn’t responsible for giving it to her..there were recriminations still to come but…the one relief was I didn’t do it to someone else.
Sarah: That was Kevin; you also heard from Michael and Kate who are living with HIV in Nottingham at the moment and they didn’t want to give their real names because as you hear, not many people know, they’ve kept it a secret but they still wanted to share with you what the experience is like which is a pretty brave thing to do. So why keep it a secret? Why not tell anybody? What are they worried about? You’ll hear exactly in the next five minutes.
Sarah: You’ve been hearing in the last half hour what it’s like to live with HIV these days, you’ll know the actor Charlie Sheen revealed that he is HIV positive, there was a flurry of headlines and interviews after he’d kept it quiet for years and been blackmailed about it for millions of dollars. Well, I’ve been to meet Kate and Michael and Kevin – not their real names – they are all HIV positive and you were hearing how Kate hasn’t told friends and family about having HIV and Kevin has only told his wife. They explained why.
Sarah to Kevin: Why haven’t you told anybody else?
Kevin: Because I expect negative attitudes..er..a changed perception of..of me to them…it’s better to just keep quiet.
Sarah: What do you fear they might say or do?
Kevin: That…that’s one of the issues I have with stigma. There’s a sort of unknown aspect to stigma, there’s an unknown element and I’m a little bit afraid of the unknown, I think.
Michael: You have these images of people steralizing all the cutlery (laughs cynically) when you leave.
Sarah: So then you’re living with a secret, are you?
Kate: Oh yeah! It’s quite lonely…can be quite lonely…and isolated…you isolate yourself because you tend not to ask people questions about themselves because you don’t want to be asked questions about yourself, so you become quiet…
Kevin: There’s also a sense of If I tell some people that I have the HIV problem, I think..they would change..there’s a sense of… you’re somewhat diminished by the whole problem; they might sort of…there might be an element of pity, you know, Oh my goodness he’s got that problem…
Sarah: I’m a little bit surprised by what you’re saying because I thought that things had moved on so much because things have moved on medically…and there are so many drugs available to…enable you to live…healthy lives…
Michael: Yes, but I mean, all that has slowed down anyway; there are no drugs coming through..um.. if you’ve been diagnosed for a long time as you know, we have, a lot of the types of drugs are written off because they don’t work for you any more…once the combinations we’re on now stop working there aren’t ..there’s nothing to move to.
Kevin: There’s also the sense that..um…because the medications have become quite effective, a lot of people see that as, you know, now you don’t have a big problem like you used to have but as..as the years wear on, the side effects to the medication are becoming more pronounced, so you can get…I’ve got stage two kidney disease, medication-
Sarah: Charlie Sheen’s been in the headlines speaking about being HIV positive; how did you feel about the way that story came out…because he was more or less forced to tell people…
Kevin: To me the reason he has come out in the open is because he wants to put a stop to all of the millions of dollars that’s going out of his bank balance…and had that not been occurring, he probably wouldn’t have come out.
Sarah: But he was being blackmailed to the tune of millions of pounds!
Kevin: That’s why he came out, he says eventually I’m going to run out of money here and whoever is doing this is going to keep doing it until something changes.
Kate: I also think that the way it was reported was disgusting because they headlined that he’d admitted that he had HIV…well, I looked it up in the dictionary and to admit something is to admit you’ve done something wrong…well that is stigma-
Sarah: Have you ever feared that you might be…you use the word ‘out’, ‘coming out’, didn’t you, an interesting word…ever feared that you might be outed by somebody else?
Kate: Definitely fear that..I’ve...I have actually had experience of telling a friend who I asked explicitly ‘please keep this…please..please keep this to yourself and…well, she couldn’t…it..it…it broke it, it broke it…no friendship there any more…and I would never, ever disclose again.
Sarah: Is this going to get better? I’m quite surpised by the level of stigma you’ve spoken about…
Kate: Not as long as they carry on reporting the way they do…like making people admit they’ve got something…which you know, that’s a horrible thing to do, I think it’s just awful.