Let's Get Talking!

Losing Control

I am a 43 year old heterosexual man living in Plymouth. I have been living with HIV for 12 ½ years.

When I was first diagnosed I was given a lot of new information: CD4 counts, viral loads and medication that I couldn’t even pronounce. Bust as I had been very ill when diagnosed everyone assumed that it was great to go onto medication. But the reality was a lot harder to accept. I had no control and had to just accept what I was told and to do what I was told by doctors etc. I never felt able to question or ask for alternatives or why I needed to be doing something. All my control had been taken away. I was scared. As time goes by and you read all the pamphlets and articles and books - suddenly there is no more information nothing more to know. Not at the level that I am interested in anyway not at day to day living with the virus level. Sure there is always new information about medication and possible side effects and some horror stories that if I look too deeply into can really make me feel vulnerable. But the longer I live with HIV the less I seem to know – nothing moves on.

Because of the stigma of HIV I can’t talk about it with just anyone. That’s especially true for me because I’ve got to talk about my past and drugs as well. I can’t go to a café with a mate and talk about my HIV because I don’t know who the person on the next table is. How will they react if they over hear my conversation. So the options are that I either start telling a load of lies or don’t go to cafes or work or parties or anywhere where people are going to ask lots of questions. Not being able to communicate leaves me isolated which leaves me with only my own thoughts. Thoughts that drive me crazy when I can’t share them. Am I going to die? What’s going to happen in the future? What long term damage are these medications keeping me alive going to do to me? It’s all still quite new this living with HIV.

HIV is such a crafty virus it doesn’t just come with physical symptoms. It’s all the other stuff; isolation, loneliness, despair. There is no end nothing changes. It’s not like I’m going to get better this is it for life. I feel locked into fighting the virus which makes me feel really tired and doesn’t leave me room for much else. I would like to start a new relationship but I don’t feel confident enough to disclose as I have tried before and always had bad experiences.

I am a fighter though and I have good days and bad but there would be many more good days if people would just get educated and take the stigma out of HIV so that I can talk to other people without fear of prejudice. The only place for me is somewhere where there are other positive people but even then I worry in case there is prejudice about how I got HIV through drug use. But it’s good to have support where I can voice my worries and get help when I need it.