Having AIDS
Caroline Guinness
I was diagnosed in 1986 when there was very little knowledge of HIV. I had just been diagnosed as having precancer of the cervix, but I felt there was something else wrong — just an instinctive feeling — there was nothing in particular.
So I went to my GP, and in fact saw a locum who was very young and enthusiastic. He felt my neck and said my glands were up, which I suppose alerted him to HIV, although he didn't say anything, suggesting it might be glandular fever. He took some blood, and said I should return three days later.When I went back for the results he said they were negative for glandular fever, but that he had also requested an “AIDS test”. I remember feeling really cold when he said that. I knew that maybe that was what it was, because two years beforehand, shortly after my husband left me and I was very vulnerable, I had slept with a bisexual man. I told the doctor that I thought he should have talked to me about it first, and that I wanted the test stopped. He said it was too late as it had already gone to the laboratories. I said in that case I didn't want to know what the result was.
About two weeks later, my own doctor who was back, just turned up at my house. He knew that I didn't want to know the result of the test, but he thought that, as an intelligent woman, I should know that it was positive. Even though I had some suspicions, I found that being told for definite was a different thing altogether. I went into shock. My first reaction was to ask how long I had to live, and he said probably about five years. My next thought was for my daughter, who was three years old at the time, and whether she would be infected too. The doctor didn't think there would be any risk to her as I had obviously contracted it after she was born, but I knew nothing about transmission or anything like that.
He suggested another doctor at the practice who had more experience than him, and had been treating a couple of gay men, and that I should go and see her, which I did. She was really sweet, but she didn't know anything about other genitourinary medicine (GUM) clinics, voluntary agencies etc. On the other hand, she was good because she was a very firm believer in complementary therapies, so recommended vitamins and minerals and things which, looking back on it, was actually the best thing she could have done. But not having any counselling and not being in a specialist situation were not good. For the next six months or so I was just in denial — it hadn't sunk in at all. I didn't want to tell anybody because the atmosphere was really bad those days, lots of scaremongering in the Press, calling it the “gay plague” etc.I did tell a couple of close friends whom I lived with at the time. One, as a gay man, found it very ironic as he thought that if anyone should have tested positive it should have been him, and the other was a girlfriend of mine who sort of panicked. She was OK, but having lost her partner a couple of years before, she couldn't bear the thought of losing somebody else, which of course didn't help me. I didn't want anyone like Social Services to know, as Lee had just started nursery school, and I didn't want it getting out. So I just kept quiet and I continued in my state of denial.
I couldn't cope with work at all — it seemed irrelevant. I told my colleagues that I needed treatment for my cervix which I thought might help explain my lack of concentration. Their reaction was that it wasn't such a big deal, and as I felt I couldn't tell them what was really happening, I resigned. That left me with financial problems, but I didn't want to go to Social Services because of Lee.
I had a partner at the time whom I had been with for six months before being diagnosed, and having to tell him, and him having to get tested was the other thing that was really frightening.
Because I didn't know how to tell him, I asked my best friend, whom he got on very well with, if he would tell him. My partner thought that he was going to be told I wanted to split up, so when he realised what it actually was, his initial reaction was one of relief, but the following two weeks, while he got tested and waited for the results, were pretty fraught. We had no information about transmission, but luckily the test came back negative, which was a relief.My fears about Lee being infected went on for quite some time because I felt I was not getting any real reassurance. I worried about things like her using my toothbrush, and I remembered I had cut my finger and she had helped me put the plaster on, and stuff like that. All those things kept going through my mind. The doctor I was seeing didn't recommend that I had her tested, as she firmly believed Lee would be alright. Looking back on it, I think that if I had just had her tested then I would have felt a lot more reassured, because the whole issue bugged me subconsciously for a long time.
Another very stressful event which happened that year was that a close friend of mine told me he had AIDS. He didn't want anybody to know, and he asked if myself and a couple of other friends could look after him. His health went downhill so quickly and he started getting dementia and incontinence etc, and for me it was like looking in a mirror — very frightening. He did actually go public in the end, but he died shortly before Christmas, so all in all it was quite a bad year.
In 1987, about a year after my diagnosis, through the Terrence Higgins Trust (THT) I finally found out about GUM clinics and I attended James Pringle House, Middlesex Hospital, which made a huge difference to me. I really wanted to meet other HIV positive women — I'd never met any, and still felt as if I was the only woman who had the virus. Someone at THT told me about a support group called Positively Women, who met once a week, so I went along to the group and met a couple of other positive women which helped a lot.
I eventually became the Director of Positively Women, and the next three years were really hard work. There was nothing for women at all, so we tried to produce leaflets and information. Despite doing interviews and media work, I never went public about my HIV status. Although our slogan said “For positive women, run by positive women”, people never seemed to twig with me; I think they had some vision of what someone with HIV should look like, which I didn't really fit into. Positive women were very much seen as drug users or prostitutes, and most of the women were keeping quiet, usually to protect their families. Through Positively Women, I did many hospital visits to AIDS wards and I used to find that stressful, worrying that I might catch something if I was going to see someone with meningitis or TB.However, after three years my energy was beginning to dwindle, and I also felt I wasn't spending enough time with Lee, so in 1991, I resigned as the Director, and went part-time. It gave me a bit more time to myself, and because I felt so run down I started using complementary therapies such as acupuncture reflexology, which I'm still having, and which made a difference.
I continued to attend the clinic every three months for a regular follow-up, and the relationship I had with my doctor was very good. She trusted my own judgement on my health, and I found we could work together. She also understood my need for complementary therapies. Seeing the same people on each visit helped maintain continuity and build up a relationship, which was important.
I decided to tell my daughter when she was about 10 years old. She's very bright and reads the newspapers, and it seemed the right time for her. Although I had never gone public about it, I knew it was going to get out at some point, and I didn't want Lee to find out from anyone else. I thought Lee might suspect, but in fact she hadn't. Her first reaction when I told her was to burst into tears, and then she felt embarrassed about crying which made me feel awful as it was quite a natural reaction.
For a week or so she kept asking me how I was, and if there was anything in particular that she could do to help. I said she could give me a hand with the housework, but that didn't last very long — I don't think that was what she was expecting! It became immediately apparent that there were no services for children, and she was desperate to meet other kids in the same situation. I suggested to Lee that she didn't tell any friends for a while until she got used to the fact. Anyway she did actually tell a schoolfriend who immediately told everyone else which was exactly what I didn't want to happen.Her school had been helpful — I had spoken to the Head, her teacher, and the school counsellor before telling her, but she still needed to talk to a trained counsellor, and again she needed to meet other kids in the same situation. None of the organisations offered services for children, but I got a letter from a woman in a similar situation and we met up so that Lee could meet her daughter, which was good for both of them, and at least she knew she wasn't on her own. Lee also started seeing a child psychologist which she really benefited from and she still goes along there when she wants to, but nothing regular.
I think that over the last year or so my energy really hasn't been so good, and as Lee has now reached 13 and is going through everything that 13 year olds do, I could really do with some help now. Her father was in Australia when I was diagnosed, and I didn't want to tell him by 'phone or letter, so I was hoping that he would be coming over to the UK at some point. Because I'd been told that I had about five years to live, I wanted to sort things out as quickly as possible. Anyway, he did come over and I told him, and he had a really odd reaction: he seemed to think I was trying to emotionally blackmail him, which really upset me. It was only later that I found out through a mutual friend that he felt that if he hadn't left me for someone else, I would never have slept with this bisexual man, and so he felt responsible, a thought which had never entered my head.
His whole reaction was one of pure guilt, but then over the years that all changed, and for the last few years he's been really supportive.At the beginning of 1992 I found I was pregnant, and I decided I wanted a termination, and that at the same time I wanted to be sterilised as I didn't want to go through this worry again. I knew enough about transmission at that point to know there was a 10—15% chance that I could pass the virus on, and although that's quite a low risk, I had seen enough other women take the chance and go through the whole nine months and following 18 months not knowing whether the child was infected or not, and I felt I didn't have that in me. I was referred to a hospital and I went there and saw a doctor in outpatients. She knew nothing about HIV — absolutely nothing. She automatically assumed I would want a termination, and before she examined me she removed all the blankets and coverings from the table, so again obviously had no idea about transmission or anything. She also asked the nurse what precautions she should be taking in front of me. It made me feel awful at what was a traumatic time anyway.
About a month ago I was involved in a conference called Living Proof, the first conference for long-term survivors ever, which was really illuminating and quite empowering. There were a lot of other women there which was great to see. I went to three workshops during the two-day event and it was amazing how the experiences of both women and men were so similar. We had all been told first that we probably had five years, then seven years, then 10 years etc. Although my Consultant never said this, it had been the general consensus, and the type of the thing you read in the press, so that when you go past those dates you feel more and more isolated. When you have also suffered so much loss and lost so many people on the way, there is a tinge of guilt that you are still here. Friends whom I told originally have sort of forgotten about it now because it's been going on for so long and they don't seem to realise that I'm still going through it all, and that it takes a large chunk out of my life, that I had to resign my job and go onto benefits.
You feel that people are waiting for you to die. It's still the uncertainty of just not knowing, constantly trying not to be in denial, because there've been enough people I know who have had the virus longer than I have and have died, and I do have definite symptoms. If I was in America I would have been diagnosed as having AIDS a while ago because my CD4 count has been hopping between 150 and 200 over the last two years. Luckily they don't do that here, because psychologically that's a hard one.
When I was admitted into hospital last year, the doctor was trying to be reassuring, saying that it wasn't necessarily HIV- related, but I didn't believe it. I found that most of the nurses had had no specialist training which made me feel a bit vulnerable. One morning I woke to find a young agency training nurse looking at my file; she said, “Oh, you were diagnosed in 1986 and you're still alive — that's amazing”, and I thought “I just don't need this, I really don't”. I was feeling so ill and didn't really have the strength to deal with it.
When you live in a little closed society like I do medically, where you go into a clinic, where everybody is wonderful and the service is fantastic, you forget about the lack of knowledge and the attitudes outside that world.