Today is World AIDS Day. Clearly HIV/AIDS is one of the most important issues facing humanity today and though much is written about numbers, statistics, research and drugs, HIV/AIDS is about people. To bring it down to a personal level here is one person’s story of living with HIV in Europe.
I will call her Rose. Although Rose is "out" to her family and close friends, she only agreed to me putting her story on Black Looks provided I did not reveal her true identity or her nationality.
BL: Thanks for speaking to me as I know this is really hard since you have not spoken publicly about your status and experience…
R: I was diagnosed in August 1987, one year after I actually caught the virus from having sex with a man once, who had AIDS but I did not know he had AIDS. I found out that he died about 1 year later.
I was 23 years old and was planning to go out to a nightclub with friends to celebrate my birthday. Apparently the man in question (who was well known) was known to everyone to be ill but nobody bothered to tell me. At the time, I considered myself to be quite responsible because I was taking contraceptive pill but condoms were not something I had ever come across or knew about and neither was HIV or AIDS. I feel I was just very unlucky that night.
BL: When you say no one bothered to tell you – what do you mean?
R: Well it was fairly common knowledge in his own circle that he was dying of AIDS but this was not spoken about because speaking about AIDS was taboo and I have never had the chance to ask the "friend" who saw me leave the nightclub with this man why he never warned me or told me.
BL: How do you feel about that?
R: Well obviously i feel very angry with the man himself because he knew he was very likely to pass this virus on to me and also with the so called friend who could have told me about the man’s status. So that’s how I got it – a brief moment in one night. But I did not know until a year later when I got tested.
BL: What made you go and have a test since you did not know anything about HIV/AIDS?
R: Well a year later I was living in London, England and I told my boyfriend at the time that I had slept with this man and he told me that he knew for sure that he had AIDS so I just went to have a test to make sure I was OK. There wasn’t much pre-test counseling in UK in those days and since I didn’t fit the stereotype of a person with HIV in Europe which was a gay man, I was reassured that the test would probably be fine. But unfortunately when I went for my results two weeks later, the rather surprised medical staff told me it was positive. That was the worst day of my life.
At the time it was simply a death sentence and I was told that I would probably be dead within a year. This year turned into two, three, four five and now its 19 years.
BL: How was it in those early days – did you start on medication, tell your family or have any support?
R: No, there was no medication available in those days but a lot of medical monitoring and a lot of pressure to participate in drug trials. The stigma against the disease was enormous so I kept it an absolute secret from everybody except my boyfriend. There was very little support available and certainly nothing specifically for women. But a few women from the clinic I went to got together and we started a support group which was the most important thing for me and for all of us I think.
BL: How did keeping this secret from family and friends impact on your life?
R: keeping it a secret was one of the most stressful aspects of having the disease and in retrospect a big mistake.
R: My boyfriend convinced me that keeping it a secret was absolutely necessary for my own safety because of the stigma attached to the disease but I now realise that it was only for his benefit and to my great detriment.
BL: So why didn’t he just pack up and leave?
R: Because he convinced himself and me that he was the hero of the story because he stood by me and did not "throw" me out on the street. But actually he made me feel that I was indebted to him which gave him great power in the relationship. So he had a hold over me.
BL: How did that affect you?
R: The pressure he put on me to keep this secret was huge. And not being able to talk about it to my friends and family increased the huge shame he made me feel about what I had done. Because it also meant at the time that I could not have children. I became very frightened, depressed and isolated, loosing all confidence in myself and feeling very undeserving of everything. It was only thanks to the small women’s support group that I survived those early years but he eventually made me leave that when it (the group) became more public ally known in case I might be "spotted" there. It took me 10 years to get out of this abusive relationship because I always felt I had no option but to say as who would want a woman with HIV? Therefore I should just be thankful and put up with it.
It is very difficult to explain what it was like from one year to the next because so many people were dying and that is what we were told to expect. Every time I got the slightest sickness I thought this was it and of course every 3 months you had to go and get your bloods tested and wait the two weeks for the dreaded results.
BL: You mentioned that initially you were not taking drugs as there were not any only drug trials. Did you join in any of the drug trials?
R: No I never joined any drug trials although we were put under a lot of pressure to do so seeing that we were dying anyway and we were made to feel that it was our responsibility to others to take part in these trials for the greater good. I never wanted to as I knew the drugs they were testing were extremely toxic and dangerous like the Concorde trials of AZT. At the time they were giving AZT as a single drug in very high doses and it was killing people.
(Gus Cairns commenting on the havoc that AZT would cause in the developing world wrote "The patent protecting AZT from generic copying ended in September and is about to cause havoc in the developing world according to GAG. AZT the first AIDS drug was invented in the 60’s but was withdrawn after it was found to cause cancer but the drug became widely prescribed to gay men in the 80’s and 90’s as a mono therapy quickly establishing GSK as the world leader in HIV drugs when AZT was manufactured in combination form after failing in the three year Concord trial. Michael Cottrell of GAG has strong views about the issue and told us "It is a scandal the Concord trial was not stopped earlier, GSK knew the drug was failing. The gay men who run AIDS, the gay AIDS mafia, quickly became wealthy in return for their silence about the carnage the drug was causing and happily colluded with institutionalised homophobia within the pharmaceutical industry". He continued "Now as then not one HIV professional will break cover and speak out against AZT being prescribed in the developing world because they fear in doing so they will be admitting their part in the UK and US scandal making them responsible for deaths and deformities the drug has caused and the way they see it the gay AIDS mafia of white men are not concerned about generic copying because the drug will be prescribed to black people not white people".)
BL: Didn’t you think they might save your life?
R: No, I spent the first 10 years of having HIV focusing on trying to be as healthy as possible to help my immune system to stay strong and taking as few drugs as I could.
BL:You say you tried to be as healthy as possible to boost your immune system and you are still alive 19 years on. Do you believe there is a correlation between poverty and AIDS?
R: Well, yes because HIV attacks the immune system then other factors that affect the immune system are vital. For example, diet, clean water, living conditions, stress levels and anything that depletes the immune system such as alcohol, drugs, or other illnesses such as malaria will help HIV to progress. I believe that the most significant factor to whether someone with HIV gets AIDS or not and whether they will die or not is economic status. The people I know who died quicker were people who had the hardest lives and the lowest standard of living conditions and or used drugs or alcohol to excess. Their bodies couldn’t just cope with it.
BL: What do you think of drugs trials today, say for example in Africa?
R: I think people are very often, individuals and communities pressured to take part in trials that doctors wouldn’t let their own children take part in. I mean there are trials and trials.
BL: Do you think there are ethical boundaries that are being crossed or compromised in some of the trials taking place particularly in African countries.
R: I think patients are very vulnerable and can easily be taken advantage of, I know I was pressurised. Especially if they don’t feel entitled to say no, they don’t feel they have any real choice. People who are poor are especially vulnerable. You never want to upset your doctor and you are frightened of doing or saying the wrong thing, of not being a "good patient".
BL: You are presently on medication – how long has that been and why did you start?
R: I started about 5 years ago because my body was getting very weak and I was getting sick more often with various illnesses and the doctors were very insist ant that I had to start taking medication. I had always been determined to manage without and I was very apprehensive and scared about taking these drugs. The first six months was very bad and I actually felt worse, more ill than before I started taking them. But my body gradually adapted to these very strong drugs and by stopping smoking and drinking and adapting my diet I know manage to take them with little side affects and they do their job in controlling the virus.
BL: Can I ask you about when and why you decided to come out of this secret?
R: Well when I started to become ill more frequently it just became very difficult to keep the secret particularly from my family. I also felt that my friendships were not true because none of my HIV negative friends knew that I was positive. So I had two lives. My HIV life and my other life. I think the stress of keeping a secret like this is very damaging emotionally and physically and I was exhausted from holding it all in for so long.
BL: What do you feel about the fact that in many countries and communities including your own, discussion of HIV/AIDS is mostly taboo?
R: Well its damaging for everybody. Its damaging for those who are positive and cant be open and its damaging for those people who are negative as it increases their risk by maintaining ignorance.
BL: You have been positive for 19 years now and on medication for 5. How are things for you right now? How do you feel about being positive and the whole HIV/AIDS situation?
R: For those of us who were diagnosed such a long time ago and are still alive – if I was in Africa I would have been dead a long time ago – we are the "lucky ones", those living in Britain or the West. But the problem is we were told we were dying and then after about 10 or 15 years of "dying" the doctors suddenly changed their story and said you are not dying anymore take these pills and get one with your life. And for many of us this has been very difficult. They try to equate having HIV nowadays in the West with medication, as being just like having any other kind of chronic illness like diabetes. But it will never be the same.
R: Because if I had diabetes I wouldn’t be concerned about revealing my identity and nationality, I wouldn’t be afraid of my neighbours or employers knowing about my illness. Because HIV will never loose the shame and stigma that has always been attached to it. The pain and despair never goes away – its the worst thing that ever happened to me. I hate it. I know there are people who are HIV+ who are much worse off than me but I feel like the last 20 years I have lived HIV and little else – even though I am not dead in some ways I am.
The whole AIDS situation that is the majority of people with HIV in the world, for them it is still a death sentence. And they are being left to die, the medical technology and drugs are there but there isn’t the will to provide people with proper health care so they just die and no one really cares either in the West or in Africa, Asia everywhere – no one cares. All the myths, secrecy, taboos, lack of drugs the whole thing contributes to death and all of it is completely avoidable.
In terms of prevention and education the most important thing anywhere in the world is for young people and especially girls to be brought up to have the confidence and self-esteem and information so that they would never put themselves at risk. So its not just about teaching people about condoms, safe sex and all of that, I am trying to say that structures that undermine girls and women, that devalue their status all contribute to the way girls feel about theme selves. I am not making a judgment I am just saying that that kind of sexual
behaviour is not healthy and is only engaged in by people with low
self-esteem. Its not about blame or whose fault it is, its just about trying to understand why a young woman would feel a need to behave that way regardless of the HIV. The HIV was a very unfortunate side effect of a self-destructive and unhealthy behaviour.
Although I think I was unlucky to get this virus the way I did, I also
believe that if as a young woman I had valued myself and was more
sure about myself I would not have put myself at risk the way I did.
Rose has read through the transcript and is more than happy for it to be posted but I think it is important for me to add that she does not feel her story is "very interesting". In her words "its dead, matter of fact. I wanted to say something but there is nothing here. I wanted to say something about how painful it is but its not here". I personally do not agree.