Interview 49

Age at interview: 26

Age at diagnosis: 17

Brief Outline:

Clint progressed to Aids defining illnesses relatively quickly. Fortunately, combination therapy had come in by then, and his original combination (Combivir, efavirenz and nelfinavir) is still effective today.

Background:

Clint was infected with HIV at the age of 17 from a partner at a time when he lacked knowledge about HIV.

More about me...

Age at interview: 26

Age at diagnosis: 17

Sex: Male

Background: Clint is a 26 year old male, diagnosed at age 17. He is founder of young people's HIV/AIDS charity 'Health Initiatives'. 

Outline: Clint is a 26 year old male and founder of young people's HIV/AIDS charity 'Health Initiatives'. He was infected with HIV at the age of 17 from a partner at a time he lacked knowledge about HIV. His school education failed to teach him about how to have safe sex. Although it was initially suspected he had cancer, he returned a positive HIV result. Clint progressed to Aids defining illnesses relatively quickly, and he felt angry that he was not told by his doctors that this was a possibility. Fortunately, combination therapy had come in at that stage, and his original combination (Combivir, efavirenz and nelfinavir) is still effective today. He has an undetectable viral load, and 400 T cells. He argues strongly against comforting notions that HIV is merely a 'manageable' chronic condition. He believes that HIV does make life more difficult, yet people can draw strength from coping with HIV. He is passionate about developing a weekend HIV service specifically tailored for young people. He believes that sexual health services in the UK must become much more user-friendly and accessible for young people. 
 

HIV is difficult to manage.

How do I tell my partners? How do I live a normal life? Can I live a normal life anymore? And these are real questions that, you know I still deal with today you know and it, people think living with HIV today is manageable. There is absolutely nothing manageable about living with this virus. People who are telling you that, they're either doctors or the professionals, they're not living with the virus every day, day-in, day-out. There's nothing manageable about it, the possibility of infecting somebody you care about or you love is always ongoing. There's nothing manageable about that risk factor. And that really annoys me you know because it's, it, yeah, [sighs] yeah just, I don't want to be rude, it pisses me off, it really is. Because it's not, you know there's just nothing easy about living with HIV.

Says that young people in particular find it hard to get what they want from sex.

This is a young people's disease, that's why I'm so passionate about it. Globally you know under 25s represent over 50% of all infections. So it really is young people who are the most at risk group and they will get the brunt of the force and the... Because they don't know how to negotiate. Or you're still figuring out your boundaries and you know, what you want in life. And attraction to someone can be an extremely powerful force and being able to say no, or this is what I'm comfortable with or, you know asking the right questions about when they've been tested, not everybody's able to do that.

He has tried to live like people without HIV and explains why he can't.

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.
 

He did not gain the knowledge and skills he needed to have safe sex.

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 became empowered following a HIV diagnosis that was difficult to cope with at such a young age.

I can't go back in time, you know and put right what went wrong and to stop the virus. But the only thing that' the only thing that made it easier for me to regain my confidence and move on from this diagnosis at a young age was realising that you know I, I have the power to kind of deal with it. Talk about it, you know get help, you know access the agencies and do something about it. Because I couldn't change that I had HIV. I couldn't take a magic pill and it'd be gone. But you know by confronting it and dealing with the fact that I, that, there are real political, financial issues that come with being positive and that a lot of people are not educated about you know what's it really like living with the disease. That, that was how I slowly got, you know got my power back and found more, you know more happier, and realised that I could do something really good you know with this. And it not be this destructive, bad, evil, thing around me, like a cloud that used to hang, hover over me at a young age. It was actually seeing that I could turn it around to my own advantage. Instead of letting it beat me, it made me stronger, it built me up and I think that's the right attitude that you have to have no matter what you cope with in life.

Believes in prayer, choosing how to respond to life difficulty, and a higher reason for him being...

I just have a view that it's better to believe in something than nothing at all. I have' I try and understand the fact that I, what, what has happened to me at a younger age, that, I believe there is a reason for that. That, you can't all' you know we've all got stories, you know people who are watching this, we've all gone through experiences that are difficult in life. Sometimes you just can't change what's going to happen to you, but the only response you can is how you deal with it. And that's always been my mind frame to cope with HIV.
 

Being so young he felt that older people with HIV did not understand him.

I mean the first year of diagnosis I kind of went a little bit off the rails, I drank too much alcohol. You know it was hard to cope with at the time and, the agencies that I'd go and attend in London, for young people. They just wouldn't be there. They were just' services weren't there, so I'd be the only younger person amongst a whole group and then, you know you find there'd be some stigma from certain people because of your age. Like the attitude would be, oh you should know better. Or what are you doing here. We didn't have all the campaigns and the funding and services you know when it first arrived in the early 80s and that's why the older generation got HIV. So they were' it was kind of' it was a strange dynamic to be dealing with and talking about issues. And I'd be in a group and everybody would be talking about how do I go back to work. And I'd be like how am I going to go back to school and finish my A level's. You know so the issues were completely different. 

There'd be situations where you felt judged because you were young and positive. And that can be quite you know hard or you know difficult on the, on your psyche, on the way you view life and what you're doing.

Believes that in the current social climate, young gay men in particular can feel ashamed by HIV.

They're [young gay men] just ashamed I think, you know there's a lot of' there's still a lot of shame that comes with a HIV diagnosis. And the young people that have come forward, there's only a handful in the whole of the country that are trying to raise awareness, or they won't publicly show their face you know in national magazines or on TV. And that can be, that, I don't know I think that sends out the wrong message. It really does and you know again there are cases of people being criminalised and grievous bodily harm and recklessly possibly infecting someone else. You know and again media attention focusing on that aspect discourages more people to go and get tested in the first place.

Facing illness and death helped to motivate him to do what he wanted to do in life.

You know very early on I got the brunt of it. I wasn't, yeah I didn't just have many years of good health and lived a normal life and then went onto Uni. It was like, no I was, I had so much HIV in my body it affected all the nerve endings internally, so I wasn't even able to pee. I sat my A level exams with a catheter bag under my jeans and nobody at school knew about it. You know and then being discharged from hospital in order to sit the exams then go straight back to hospital. You know that, it was extremely difficult and when you see what the virus can do to you, physically, emotionally and psychologically you, you're, you're even more aware that OK I need to get cracking. My time is short and you know I need to make the most of what I want to do as quickly as possible.