Clint - Interview 26

Age at interview: 26

Age at diagnosis: 17

Brief Outline: Clint was infected with HIV at the age of 17 from a partner and, at the time he lacked any knowledge of HIV. Clint rapidly developed the symptoms of the AIDS defining illnesses. Although it was initially suspected he had cancer (a common kind of presentation for AIDS), he in fact had a positive HIV result.

Background: Clint is a twenty-six year old male, diagnosed at 17. He is the founder of young people's HIV/AIDS charity 'Health Initiatives' www.healthinitiatives.org. Ethnic background/nationality' White British.

More about me...

Clint is 26 and the founder of the young people's HIV/AIDS charity 'Health Initiatives' www.healthinitiatives.org. He was infected with HIV at the age of 17 from a partner and, at the time, he lacked any knowledge about HIV. Clint rapidly developed the symptoms of AIDS defining illnesses. Although it was initially suspected he had cancer (a common kind of presentation for AIDS), he in fact had a positive HIV result. Clint progressed to having AIDS defining illnesses relatively quickly, and he felt angry that he was not told that this was a possibility. Fortunately 'combination therapy' was available, and his original combination (Combivir, efavirenz and nelfinavir) is still effective today. He argues against any comforting notion that HIV is merely a 'manageable' chronic condition. He knows that HIV does make life more difficult, but also appreciates that people can draw strength from coping with HIV. He is passionate about developing a weekend HIV service specifically tailored for young people.

The doctor didn't make him aware that 3% of people with HIV develop AIDS much earlier...

 I, I'd just met, you know it was'. I'd just met a guy after my first relationship and that was then and you know I was 17, I just did my first year of A-level's so I was still at school. And then three months on from when we met, I suddenly just became really, really ill. I had PCP, I had pneumonia. I had a whole barrage of tests on my body to find out what was going on, and took' they took the gland out of my neck because they thought it could be cancer. I progressed very rapidly. And at the time I didn't know this.

So you didn't know, you had these illnesses but you didn't know what they were?

I didn't know what they were, I was hospitalised for months, I had PCP, pneumonia, CMV, all of the Aids defining illnesses you need. You know CD4 dropping below 200 within the space of one year. When I had that diagnosis though they, they, the doctors said to me don't worry you have ten years of good health. But I didn't realise that when you actually do the research on the studies, 3% of people will develop Aids very rapidly.

So you were getting these classic Aids illnesses, then, did the doctors know?

They thought the likelihood, you know because I only had two partners it was very low risk. They also' you know I mean, and I think the major concern, that's why they did the biopsy on my neck, you know on my gland there, was cancer. That was more in their forefront of their mind, you know glandular fever type illnesses, in my whole body all the lymph nodes were swollen. You know in my thinking if it was cancer I could be dead in a year, yet with HIV the prognosis is, you know somewhat better.

Yeah. And so, but they did do a HIV test and?

It was just very routinely, I had no counselling, no preparation, it was'

Were you asked about it?

I was just told that this was a routine test, so they just wanted to make sure I didn't have, you know this illness. Take it off the list of possibilities, because they wasn't sure what was going on within my body. So I had no real kind of understanding of what HIV or Aids was. I just knew if I got it I was going to die because that was the image that is kind of projected through the media.

OK and so then the test came back positive?

Well yeah a week later the doctors then asked me to come back in for more tests, so, you know they.

All right, OK.

Yeah.

What was that, I mean getting the result, what was that like?

[laughter].. such... I'm sure everybody else will tell you it's just earth' you know earth shattering. Anybody who gets a diagnosis of any illness you know you just'. It's like having the rug pulled underneath you, your whole world. You know I was at the age of 17 when my life was just beginning. I'd just started to look at my future. I was planning for university, I was just making decisions of where I was going to go. And to be told that there's this possibility of a death sentence hanging over me and then I was rapidly progressing to Aids it was just scary as hell.
 

Says that young people should know where sexual health (GUM) clinics are and what they need to do...

I think you'you know, at 17 I was very na've, I was very young, very believing. And when I was lacking confidence it was because I just didn't have all the knowledge. I wasn't worldly enough, I was just you know kind of, newly arrived and wanted to experience life and learn as much as possible. But if you don't have all of the information and knowledge at school you know it boils down to luck. It's like a national lottery that you get a teacher that's able to talk about these issues with you and that's not how sex education should boil down. Everyone should know where their local GUM is, know where you get tested. Know what service is available in case it is a positive result. But even when you access medical services or, you know you speak to medical professionals and you want to get the best advice, because you're at such a young age sometimes they want to protect you, they don't want to just give you the information and that was what happened to me.

He does not complain about the side effects of his HIV treatment because he is grateful for the...

Yeah. I mean it's amazing, it's amazing the drug treatments. I would not be sitting here now if I hadn't started triple combination within the space of one year. Yes it keeps the virus minute within my body, but it's still there and you don't know how long they're going to work for.

Initially on the drug treatments I had side effects, skin rashes, complaints, dizziness, tiredness, they eventually wore off as time went on. But they still don't know the long term side effects of efavirenz which causes sleep disturbances and you know weird dreams and'

And do you get that?

Yes, very much so.

What's that like?

Just crazy dreams, I can have six, seven dreams in one night, which can be a little bit weird.

Is that worrying or?

I'd, I've always dreamt, dreamt a lot as a kid anyway. I always had vivid dreams as a young boy so'. Yeah not nice but you know, it's a small price to pay though. I mean there's countries not even able to afford the drug treatments I'm on. So you know it's not something I moan about, I'm very grateful for being given the opportunity to live.

His HIV makes it difficult to find a partner. He's open about his condition from the start.

Being young at 17 and then going through this huge experience, does impact as you get older your views of relationships and how do you go about it. You know like recently I've wanted to do things perhaps other young people have done and go out and have fun and party. Meet someone, not worry about HIV but' reality is I just can't, you know I can't live a normal life. That's why I say it's not a manageable illness. Because it does place restricting, you know restrictions on the way in which you live or go about. You know you can't, you can't be like your friends. But part of me wouldn't want to be either. But it is extremely difficult and lonely. You know trying to be honest and find someone that's going to be honest with you. Because if I'm going to sleep with somebody then they need to know I have HIV, and that leaves you automatically open and vulnerable and all of that stuff. But, you know it's, it's worth just being yourself, I can't be anything more. But it doesn't always go into my favour and, you know, that can be quite difficult dealing with some people's reactions.

Yeah. I, I'm, I mean I've been, you know I've' I've dated guys and it's just, you know I, you want, your priorities in life when you're positive they do change, you know. And I want more and I'm not willing to settle. And then I stand back and I look at myself and I go well what do I have to offer in a relationship when I've got HIV, I've got my charity work and I, I'm so focused around this issue that, you know it would probably take someone extremely special to be able to kind of take me on board, with all the baggage that kind of comes with me. Because it can't be easy for any guy, but you know, we all get lonely. I'm only 26, I want to be able to live a normal life and have fun and go out with my friends and then I do that and I find myself in a situation going I don't want to be dealing with this too much. I think that it's part of me growing up now really. You know, because I went through a period when I first got diagnosed where I didn't want anything to do with you know dating and relationship. And then I went to San Francisco and I met other young kids and they were like, you know it was normal that I had HIV. So, and that re-adjusted my outlook and you know changed the way I approached relationships and then came back to England and then, you know I really have given relationships a good go but it is too much hard work.

But I'm, and I'm also on the mind frame that there are' I would want to know if went to bed with someone if they had HIV, and the fact is that I've got it because somebody didn't tell me, so why should I keep going' You know passing it on when, you know, I'm, yeah I'm trying to get the words out but it's not coming.

It's fine, it's very clear. 

Yeah I just don't want to' I just don't want to be like the person who infected me at the end of the day. And I think if you're just honest and say look this is who I am you know like it or lump it, it can be good'
 

Sexual health clinics don't tend to be open when young people need them and are not welcoming...

OK, I mean, the problem with health' well sexual health services at the moment is they're not accessible to young people, they're Monday to Friday, 9 to 5. That doesn't fit' excuse me it's repeating on me, the coffee, we will get this, this will be a good bit. Yeah the problem with sexual health services you know and, you know GUMs, Genital Urinary Medicine is that they're just not accessible. Monday to Friday, 9 to 5, most of us are at school or working. As an environment they're really overrun, there's delays to be seen by the doctor. Reports have come out in the House of Commons saying it can take up to 14 days to get seen by a doctor. Yeah and I think that young people have unique specific needs that need to be met in order for them to feel comfortable and want to go and get tested. Because it is a huge life changing experience to go through. And that, you know if you're not prepared and ready or the services and not geared up in a way which is supporting you, then it, it can do more damage than good.

So for a young person sort of arriving in a GUM clinic attached to a hospital what does that look like?

Just very clinical and medical like you'd expect in any hospital.

So what should it look like?

Impersonal, you know not friendly, it's not welcoming. It's not accessible and' You know the programmes in the US where the, you know funding's more available, you know we're very much more geared up about encouraging people who, who are already living with HIV to have an active role in the community. To raise awareness, to run educational workshops, to encourage clinics to' to adapt services on the evenings or on the weekends. Where kids can come in, get tested, talk to their own peers and get information on a one to one basis that perhaps they wouldn't feel as comfortable discussing with a doctor.