This is the testimony of a fifty year old heterosexual man living with HIV. He was diagnosed with HIV eight years ago. In his interview, he discusses the impact living with HIV has had on his work, relationships and his experiences through using services. 

I did lots of crying, lots of brooding, lots of hiding away, lots of guilt, lots of frustration – it was a very emotional time. For a while I felt really stupid as I had done this to myself, and I felt as if I was being punished.

Finding out I had HIV

“I was very sick; I had lots of lesions, bowel problems and had lost an awful lot of weight. I had dropped down to 6 stone. My boss at the time sent me the doctors, and I was more or less told on that day what it was going to be, she suspected straight away. The anticipation was really hard to live with. When I went back a week later and she said to me she had been dreading seeing me again; she’d never told anyone before that they had an HIV diagnosis. 

"I was more or less told a little bit about HIV, but I didn’t take it in straight away. You just hear HIV, and I thought it was a death sentence.”

My own reaction

“I did lots of crying, lots of brooding, lots of hiding away, lots of guilt, lots of frustration – it was a very emotional time. For a while I felt really stupid as I had done this to myself, and I felt as if I was being punished. 

"So I blamed everyone but myself for a while but in the end it was me, I had to hold my hands up to it, it was my responsibility. I was kind of careful but not all the time. I’d made a silly mistake. It took a long time to come to terms with that, I think I cried for about 2 years.”

Getting treatment

“My CD4 was really low at 4 so they more or less within a fortnight started treatment but I got meds straight away. I was told I wouldn’t recover from that having such a damaged immune system. 

"My CD4 count is now about 850, but that has taken a lot of change in my life. I’ve had to feed myself properly, look after myself, stop taking drugs, stop drinking, and work on stopping smoking. 

"I experienced side effects of the meds and I’d say the biggest one was nightmares. It got to the point when I was scared to go to sleep. As soon as I mentioned the nightmares, that’s when they took me off the meds that had Efavirenz in them. I had gone weeks without sleep because of them. If you don’t sleep it affects everything. I just couldn’t operate. 

"I felt kind of stupid not talking about it but I didn’t realise, without reading the information, that one of the side effects of medication can be nightmares. So I learnt pretty quickly to start ask questions about meds and side effects.”

My job

“Well, they were quite sympathetic and quite supportive for maybe the first 6 months, because there was no way I could physically work for 6 months. I think it was about 4 months after diagnosis that I phoned them up and said I am ready to start work, more for financial reasons than anything else. 

"Physically I was not in a good way but I needed to work, I had my own mortgage and had to look after myself. So I said to them I wanted to come back to work but they couldn’t afford to take me back on. 

"I don’t think it was the stigma that kept me out of there but thinking realistically, when the company recovered, I should have been the first person they called back to reemploy but they never did.”

Changes to my own attitude

“Stigma, I’ve heard that word so many times since diagnosis, but the only time I have experienced stigma is my own personal stigma. Nobody else has hit me with stigma. I had to battle my own ignorance and educate myself. 

"I suppose it probably started from the information I was given in the 80s regarding HIV and AIDS. Although I knew I had never done anything homosexually I’d always thought it was a homosexual disease. And I have never injected myself either. So I was neither of these and so it was supposed to be impossible for me to catch it was the information I had been given in the 80s.”

Services that helped me

“My support network has been solely with Waverley Care and I suppose the biggest impact was Milestone House. I was raced in as an ‘emergency job’ you could say. That was for financial reasons more than anything else. I ran out of money and I was waiting on my benefits getting sorted so I was raced to Milestone, and I was in there for 6 weeks. I’ve never been back since. That was three years after my diagnosis. 

"Originally, I didn’t access Waverley Care because I wrongly thought of them as solely a gay organisation. I was very much a homophobic at the time, it kept me away. But Milestone opened my eyes to a lot of things such as the kindness from people. Nobody had been kind to me for many years, and to have that back in your life was quite a strong thing. 

"I hadn’t met anyone else with HIV up until that point but it was one of the best things I have done. After that I fully accessed the services at Waverley Care and that brought me back to life. I lost a lot the day I was diagnosed, but I also gave up on myself, but Waverley Care helped me get it back. I would have never gotten over my ignorance if it wasn’t for them.”

Moving forward

“I think a good consequence of living with HIV is the path I am on now, I’ve done a lot of self help courses and further education and I’m looking at working in health and social care myself now. I know a lot about blood borne viruses which I would never have known without them. 

"As for moving forward with HIV, we are going into the realm of the unknown there, they don’t even know the long term effects of medication. I sit and wait and hope that I am not going to suffer any long term effects from the chemicals I take to keep me alive. But I don’t spend a lot of time thinking about it. I don’t think any further than tomorrow. 

"I’ve dealt with my own prejudices, I’ve found forgiveness everywhere.”