Better off knowing

'Have you looked in the mirror?’ the GP asked me. I thought he must be a bit mad! I had only just managed to drag myself from a bed I’d been lying in for days, too sick to move. Where would I even have found the strength, let alone time, to look at myself in the mirror?!

As it turns out I looked quite yellow and he suspected I might have hepatitis. He asked me to go for a blood test at the hospital. This was when I was a final year student at Manchester University. I never went back for my results as I was doing my exams, felt better and moved back to London. My medical records were transferred to a new GP who in turn called me to the surgery, confirmed that I had had hepatitis B and suggested I go for a test to ensure that things were ok, and then suggested I go for a second to make doubly sure that all was well. I did as I was told. Weeks later, he called me back to the surgery. I remember I went with my little sister and when I was called in, I took her with me but he said I should go in alone.

I thought nothing of it. As soon as I sat down, he told me that I should go for an HIV test. I think the blood must have drained from my face because he said, ‘you look very pale.’ What did he expect? He had just told me to go for an HIV test, no information, no discussion! I sat there in silence while he wrote on the piece of paper that I was to take with me to Whipps Cross Hospital instructing them to do a blood test for HIV. I remember looking at it and seeing the word HIV written on it. I took it, picked up my little sister from the reception, and walked home.

I hid the piece of paper under my bed and went to the local library to look up hepatitis. I never went for the test. After a couple of weeks (in those days it took about that time for the results to come back), the GP wrote to me. I remember the letter said something along the lines of, ‘I strongly suggest you go for an HIV test’, with the ‘strongly’ underlined in red. I got so scared, I took myself off to the hospital the next day. It was not an easy day. After two weeks, the GP rang me and asked me to go to the surgery. I never went back. So I never really found out my results from him. However, from then on, every time I read a newspaper or watched TV there always seemed to be something about HIV, as if reinforcing the message that I must be positive. I lived with uncertainty for about six months, then I thought I’d be better off finding out for certain. I went to a local hospital where they did pre and post-test counselling. This time I am glad to say that I went for the test and I was much better prepared.

Around the same time, my brother had just disclosed his HIV status. He was quite unwell and spent long periods in and out of hospital. He must have had every opportunistic infection going. He had Kaposi’s sarcoma, meningitis, fits and [tuberculosis] TB. He sadly passed away a year later in 1994 from PCP before I had a chance to disclose my status to him.

It was a difficult time for me, though one of the first things that gave me the strength to carry on was the fact that I got confirmation of my diagnosis in the same week that I got the offer of a job as an information officer for one of the then Regional Health Authorities. I decided I might as well take the job and keep myself busy while I waited to die. I think it was one of the best decisions of my life. Since then, work has been a great source of strength for me. I also decided quite early on that I had to find a way to cope with my diagnosis. Either I could choose to be bitter and twisted and blame whoever infected me, or I could make the most of whatever life I had left. I chose the latter and to this day, I appreciate each day that I am alive. I do what pleases me, within limits of course, and make absolutely no apologies for it!

This story was first published on the Positively UK website. Thanks to Positively UK for giving permission to reproduce it here.

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