Robin’s story

"It’s been a long road, and I’m not nearly at the end of it yet."

“I was homeless at the time of my diagnosis. I had been to my doctor about six times, as I had been really ill for months. I felt sore all over, my legs were sore, my arms were sore, I felt sick, I had no energy, and I knew something was wrong but I just didn’t know what. The doctor did some tests and said they were fine, but I kept saying to him, “I’m not fine”. He kept telling me I was ok, that I was fine, and in the end, I went and got tested for HIV at the clinic. At that time, you had to wait two weeks for the results, and they felt like the longest two weeks of my life.

Being diagnosed with HIV was like being hit by a brick, because back then the life expectancy was pretty rubbish, and I had it in my head that I wouldn’t live to 40. Over time it’s got better, I’ve had a load of tablet changes over the years, and now I just take two a day. The virus is controlled now, undetectable, and untransmissible, which I never thought would be the case.

The older medications were huge, you used to have to break them in half and dissolve them because they were impossible to swallow. I just couldn’t handle taking 15 tablets a day that made me feel so ill. I coped by going out clubbing, and I had a drug habit for years, just to escape from it all.

The mental health side of it is still hard – I take antidepressants now or else my head explodes. My depression used to be really bad, and it was even worse depending on some of the HIV tablets I was on. I used to take one tablet which gave me really horrid, vivid dreams, night sweats and everything. The dreams were so real that sometimes I would wake up in the night crying, and that would really affect me.

Things aren’t as bad now as they were, but the stigma is still there. I find myself still having to educate people. I don’t mind, I don’t have any qualms about telling people I’m HIV positive anymore. I felt a lot better when I first started telling people, I hated keeping it a secret – I had a lot of friends, or people I thought were my friends, who stopped speaking to me when I told them. But my other friends, they were ok with it. When I used to go out and bring someone back, I would always tell them, I didn’t want to not tell somebody, because that had happened to me, but the amount of people who just got up and walked out of my house is unreal. Back then, it did affect my relationships a lot.

Having HIV helped me find myself, in a way. Before I was diagnosed, I didn’t know myself at all. There is something about the virus, living with it, that makes you act. If I look at my life before then, I was homeless, I wasn’t working, and now, I have a job, a flat, and I’ve hit 50 which I never thought I would. It’s been a long road, and I’m not nearly at the end of it yet. I don’t think my younger self would believe where I am now, he would look at me and say “whaa? What was all that panic for?”

Robin’s story is part of the H is for Human series, in collaboration with the Terrence Higgins Trust, sharing stories of strength, courage and hope from four decades of HIV in Scotland.

For more information on Terrence Higgins Trust and to learn about the work they do, follow this link.

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