HIV: A personal story

Pills

NDM spoke to one of Associate Professor Lucy Dorrell’s patients about her experiences discovering that she was HIV+. The female, aged 50, has asked to remain anonymous in order to give an open and honest account about her feelings about the diagnosis and living with HIV.

"I haven’t been very well since my mid-twenties. I have been to my GP so many times over the years saying “What’s wrong?” I’ve had shingles four times for example, which is unusual. I think part of the problem of getting diagnosed is that you don’t normally see the same GP. Mine is a huge practice, and my GP has changed so many times over the years that there has been no ongoing care.

Having felt ill for at least 25 years, I had some quite strange symptoms in February. I was aware of the genitourinary medicine (GUM) clinic up at the Churchill and I went there because I had symptoms that I wanted to check and I knew that they had a drop-in clinic. While I was there I was offered a routine blood test for HIV and all the STIs. I went merrily on my way having received treatment and three days later whilst I was at work my phone rang. It turned out that there was a problem with one of my tests. I was told that my HIV test had come back positive and that they needed to do it again to check, as it might be wrong. I had that overwhelming feeling that my world coming to an end, but also in the back of my mind there was a feeling that it made sense.

I was supposed to be going to a meeting but instead I drove to the hospital. It turned out that they had already done the test 3 times and saying that they needed to repeat it was just a way of trying to keep me calm. It was not the best way to find out but I do understand that they needed me to come back to the hospital and I kept asking why.

I thought that I would die. How I was going to tell my kids? I went home that day having had all the tests to find out what my levels were and then had an appointment with a consultant the following week. It was at that appointment that I was told that it didn’t alter my life expectancy and that with treatment I would now be healthier.

I was in my 20’s in the 80’s and in those days people didn’t want to get tested because you were told that you would have to tell your employer, put it on insurance and it was a big deal. I realised that I might have been at risk but I didn’t really think about it. As the years passed, I got married and had two children; the children were fine and healthy so I thought that I must be ok. No doctor ever suggested that that might be what was wrong with me.

"I think that there is a general ignorance in the public that you think you will know if you have it because when you have blood tests you will see it. People don’t understand that it is a very specific test and that if you don’t have that specific test then it won’t show up. I was quite ill last year and they started investigating whether I might have lymphoma as they thought I might be immune suppressed but not one person asked if I had ever an HIV test because I don’t fit the profile. So many people have asked me how I got it and I say “probably the same way as everyone else!”

It came to light that I had probably had it for rather a long time. Fortunately, it turned out that both my first and second husbands and my 2 children are negative. Looking back, the likelihood is that I got it when I was 19 and I just never knew. I am just so grateful that I’m here at all, that I haven’t passed it on to anyone and that in a way I wasn’t diagnosed back then because I would’ve had those early treatments that were really damaging to the body.

The treatment is so easy to take and so effective. I have to take 3 tablets once a day. A lot of people only have to take one but I am unfortunately allergic to one of the components of the tablet so I have to take 3. I don’t have any bad side-effects and I feel healthier than I have since I was 25. The message that I want to get across is that people mustn’t be scared of HIV. Everyone who’s ever put themselves at risk at all should go and get a test. It is not a death sentence and it is not even a big deal really. The worst thing is other people’s ignorance, lack of knowledge and understanding and the stigma. People throw flippant comments around but unless I tell them, nobody can tell that there is anything wrong with me."