I’m still uncertain as to when I contracted HIV. I’m in a long-term, loving marriage and am far from the stereotype people may have in their minds about ‘the sort of person’ who gets HIV. In fact, the only moment I can imagine in my life that I was open to HIV was when I went to a dentist’s surgery in Jamaica: I underwent a procedure there involving a needle, and I’ve reason to believe they didn’t sterilise it properly. It was just a terrible accident.
Perhaps that’s why so many doctors passed me over for an HIV test. I was living in Guildford with my husband, Tony, when I first began to experience the symptoms of HIV – though we didn’t know that at the time. We visited my GP literally hundreds of times over a year; I was admitted to hospital five or six times; I had blood tests taken and several unsatisfactory diagnoses made, none of which ever made me any better.
So I simply got worse and worse. There came a point when I was resident in the hospital, with my husband visiting me after work every single day – and seeing the pain I was experiencing getting worse and worse. Still the doctors didn’t know what was wrong with me. I was increasingly unaware of what was wrong, but my husband tells me they resorted to giving me ever stronger painkillers each time he would complain about my condition. Eventually, I developed what’s called cerebral toxoplasmosis. This is a condition of the brain caused by something often found in raw or under-cooked meat. We’d been to France, where one of the local delicacies is very rare meat. The point is, though, that most people can fight it off: only those with weakened immune systems develop the condition I did, a series of quite large lesions on the brain.
It was as I underwent treatment for these that a doctor finally thought about referring me to an HIV test. I was, of course, positive. When we first met Dr Steve Taylor at Heartlands Hospital, my husband asked him why my HIV had not been caught by the many blood tests I’d had at my GP, or in the hospital. We were both amazed when he told us that it was because HIV isn’t included in the standard screenings that routine blood tests go through! We just don’t understand why not – it’s such a serious condition, but such a simple test. When I was finally diagnosed, my CD4 count was 12 – 300 is considered the point at which treatment should begin. My HIV had gone on for so long that it had begun to attack my kidneys. As a direct result of how late my diagnosis was, I’m now on daily kidney dialysis because of the damage done to them by my HIV. I’m still very hesitant to speak out, because I know from personal experience how much stigma and silence there is surrounding HIV: it’s why no one thought to refer me to test, and it’s why my health has been so damaged.
But I have a job now, and our lives are improving slowly but steadily. You can get through an HIV diagnosis – but it would be so much easier if the test was done as standard, and if no one was diagnosed as late as I was ever again.