Embarrassing Illnesses

Tina Middleton caught HIV when she was just 20 years old from a partner with haemophilia. She is now 35 with two children

"I had been in a relationship with someone with haemophilia and didn’t know he had HIV until I got pregnant. I had a test straight away and, at first, it seemed alright as it came back negative. However, in March 1992 when I was eight months pregnant I had another test, which was positive. It was the worst possible news.

"I didn’t tell anyone. My main focus was just to get through the pregnancy. Not much was known then about HIV in pregnancy and when I came to deliver my baby the staff were all gowned and masked up. It was horrible. It was not known that a caesarean birth is safer so I had a normal delivery and I was then put in a ward on my own, away from the other mothers. I had to tell my mother and my best friend as they wanted to know why the nurses were all wearing masks. They were shocked and I wasn’t able to reassure them as I knew so little myself. The attitude was, 'Keep it quiet and don’t tell anyone else.'

"The months following my son Adam’s birth were awful. Looking back now, I don’t know how I got through it. I was suicidal. I had split up with my partner by then (not because of the HIV) and all I used to do was cry. I used to look over the balcony of my flat and think about jumping off. Other people found out without me telling them and some of my friends didn’t want to know me. Others asked if I was a sex worker.

"When I went to the HIV clinic the staff were fantastic, really supportive, but at that time HIV was considered to be a disease of gay men and I was the only woman there. I felt very isolated and low.

"Five months after my son was born I met up with Andrew, who I’d known for a long time. He knew about my HIV status and he and his family were accepting. We got married and three years later I had my second son, Mark, through self-insemination so as to avoid passing the virus on to my husband. Life became better but I was still being told I only had eight to 10 years to live and so I put my life on hold.

"Things started to change in 2001 when I split up with Andrew. I realised I had to be independent, for myself and for my sons. And by then things had changed on the HIV front - there was medication, and I was healthy. People were more aware that it wasn’t a death sentence.

"I didn’t want to talk about having HIV for years but today I am much more open and I no longer feel isolated. I have had a couple of bouts of serious illness and have disclosed my HIV status to friends who have been accepting and wanted to know how best to support me.

"After I split up with Andrew, I had to learn how to make new relationships. The way I approach it is to get to know potential partners as friends first so they get to know me as a person. I have never had sex without telling them first but that is a huge pressure. It is hard and it never gets any easier; for the week before I tell them I hardly sleep for fear of how they will react. I always worry they are going to turn nasty, although, in fact, I have been very lucky and none of them have rejected me.

"I’m now in another long-term relationship and my current partner, Martin, is great. Before we slept together, I gave him information and leaflets and told him about PEP.

"HIV is part of our lives but we don’t really talk about it much, although he does nag me if I am late taking my tablets. It is a nuisance having to use condoms all the time. It means that every time we have sex it comes to mind and we both wish it didn’t have to. But apart from that, it doesn’t come into our lives that much.

"I’ve been on medication since 2001 but have struggled a lot with side effects and after a couple of years found I was resistant to most of the drugs I was taking. Last year I decided to have a treatment break, which was originally to be of three months but ended up being six months.

"During that time, I became ill with bronchitis and subsequently a type of pneumonia (Pneumocystis Carinii Pneumonia (PCP) which often affects people with HIV). My life was touch and go for a while but I’m better now, although my energy levels can be low and I have had continued problems with breathing.

"I’m now on new medication, and the side effects have stabilised. My CD4 count has improved, although it is still on the low side, and my viral load is better. Having said that, I don’t go by my CD4 levels but by how I feel. I know myself better than any doctors do and today I feel healthy and fine.

"My sons still don’t know I have HIV so that is the next hurdle. Part of me wants to pre-plan it so there is someone there who is supportive but part of me thinks I will just come out with it when the time seems right. I have worked for the Terrence Higgins Trust for four years now so they are both well aware of HIV and the issues surrounding it and are very accepting, so I don’t think it will be a problem.

"I’m really optimistic about the future. I have got my own mortgage and I love my life and the work I do. I know there are still lots of hurdles to overcome but I have a lot to live for and a lot to do yet. It's good to be able to share my experiences with other people. 

"I often go out and give talks about HIV as part of my work and people are frequently surprised when I say I have been living with it for 15 years. But it’s true what they say, you can’t put a face on HIV and in a strange way, if it hadn’t have been for my HIV I wouldn’t be who and where I am today.”