Black Looks - Including an African LGBTIQ+ Archive

HIV/AIDS

Personal Story – Living with HIV

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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. 

BL: Why?

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.   

BL:Why?

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.

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24 Comments

  1. A very moving story. Thanks for granting the interview. Something to reflect on.

  2. I really dont know what to say, but this really has created an impact in me, in terms of more understanding of the predicaments faced by the people diagnosed positive. Thanks for sharing the interview.

  3. dm

    Very moving indeed. Rose is a very strong person.

    There is a new related story in Australia where a man has been convicted for doing the same horrible thing.

  4. That was very revealing.

    I have worked in HIV/AIDS control and prevention programs in Nigeria and as a counsellor, I saw cases of those living with HIV who couldn’t reveal their status and felt safer keeping it secret. But, the tragic case was the man who had HIV and never told his bride.She contracted the HIV and soon had AIDS and she died whilst he still survived.

    Now our church, the Redeemed Christian Church of God (RCCG)has made it mandatory for would be couples to be tested for HIV/AIDS before marriage in order to save innocent lives.

    The dangers in Nigeria are terrifying, because of the poverty in the country has forced thousands of girls and women into commercial sex and the use of the condom is optional. Commercial sex workers charge more for sex without condom and charge less with condom. So, they are ready to risk their life if the customer pays extra. And how dangerous for those who prefer to have sex without condom.

    I always tell people that most girlfriends and boyfriends have multiple lovers and since most of them lie about their past relationships, one is in danger of contracting HIV/AIDS in ignorance of the simple facts of life.

    The case of a highly respected surgeon in Ghana who passed on pubic lice to his European wife shows the dangers of High Risk Behaviour in Africa as most of our men have indiscriminate sexual intercourses with house girls, street girls and bar girls and also return to sleep with their ignorant wives!

    I can track how HIV/AIDS spread in African communities and I can tell how to control and prevent the spread from community to community.

    There is a red light district called “Monkey Village” on Bonny Island here in the Niger Delta of Nigeria where girls and women from all over Nigeria commune to sleep with mostly White expatriates without bothering to know their medical history and many of these girls are from Nigerian colleges and universities with campus boyfriends and their “Sugar Daddies” who are ignorant of their sexual escapades in the “Monkey Village” on Bonny Island.

    Moreover, most people in Nigeria have refused to test for HIV/AIDS. So, millions of those with HIV/AIDS cannot be detected.

    Most of the so called anti-HIV/AIDS drugs supplied to us in Africa are questionable.
    But, as we beg for more Aid, the grants come with dangerous consequences as well.

  5. o

    Thanks to all of you for your comments which I have passed on to Rose – she very much appreicates that people have listened.

  6. This is an extremely useful post and does help to put a face to AIDS. I know so many people who are dying or sick, but I sometimes forget that people in other countries probably don’t.

    On a similar note, you may also be interested in reading four posts that I found today on a blog called the Thembinkosi Foundation. Beginning on Nov 24 and ending 30 Nov (yesterday), the four posts tell the story of one man’s death, his funeral and his family’s perceptions of HIV/AIDS. The posts are titled (starting on the 24 Nov) Death and hardship in Zimbabwe; The Bulawayo funeral house; Death without dignity in Zimbabawe; and How could anyone not know about HIV/AIDS?. I plan to write a post about them tomorrow. I found them so interesting and moving, especially as they were written from the perspective of someone looking in as an outsider.

  7. JKE

    O & Rose – thank you for sharing this important story with us.

  8. Great post, Owukori!

    I’ve often I questioned the efficacies of the public health interventions being implemented to fight this disease in Africa. It is obvious that it has failed in many areas of Africa. Only Uganda has been able to mount a successful campaign against HIV/AIDS.

    Until the stigma and cultural beliefs associated with the disease is fully tackled, the war against HIV/AIDS will forever remain lost. Africans are deeply entrenched in strong cultural and religious beliefs, which unfortunately have rendered the majority of interventions against this disease impotent. These beliefs must be addressed in practical ways- not just mounting billboards or staging ads in the media.

    Once these cultural and religious barriers have been broken, communication channels can be established so that there can be open and free discussions and deliberations about HIV/AIDS. Once these are achieved, then widespread screening and pharmacotherapy can begin. To carry the virus untreated (and probably undiagnosed) for many years, as is the case in sub-Sahara Africa is simply a one-way ticket to an untimely death.

    I must state that some African head of states must be full of shame for their stance on this disease and the unnecessary controversies they have generated against the use of the antiviral medications. Yes, it most unfortunate that many lethal side effects occurred at the early stages of the clinical trials, but such occurrences are common in pharmaceutical trials and these failures should not be sensationalized.

    It takes a lot of time, resources and energy to perfect the “winning formula” for any drug and there is no drug that is totally free of side effects, and given the complexities of Human Immunodeficieny Virus, and the fairly short interval it took to come up with a drug(s) that arrest and actually decrease the viral load without serious side effects is a miracle. These medications should be freely available or heavily subsidized, and widely used in the fight against this dreadful disease.

  9. HOLA! como has estado? are you planning to do any holiday traveling? I have just been really busy cooking AND with:
    http://panamagourmet.blogs.com/tastydesign/2005/12/ant_farm.html
    Hugs!
    Melissa

  10. Excellent post, as usual you take great care and sensitivity.

    It is a shame what some men do to women. So stupid, careless and senseless.

  11. Cherynne

    A year on I have just re-read my interview on Black Looks and the comments people were good enough to write. In September I celebrated 20 years of living with HIV with a group of positive friends. This past year has been a very significant year for me especially in terms of my mental and physical health.
    I have changed my HIV drugs so that instead of taking Combivir (which includes AZT ) and Nevirapine twice a day, I now take Truvada and Nevirapine once a day. The change of drugs itself has been very successful keeping my viral load undetectable and helping my CD4 count to climb to the greatest heights it has ever reached. Also having to take the pills every 24 hrs instead of every 12 hrs has made a very significant difference to my quality of life, much less pressure.
    At the same time I have been able to seek help for depression and anxiety ; the treatment, which consists of seeing a psychologist and taking antidepressant medication has not been a miracle cure but a very big step forward and away from those deep dark dungeons and the attractive call of death.
    Today I feel able to say that my real name is Cherynne Carayan and that I am a Lebanese woman and a Lesbian, not because the prejudice and stigma has reduced in the last year but simply because I do not feel so much fear about it. This is partly due to the circumstances of where I live, but I know that the reality for most people is that being open about their status would involve risking their jobs, homes and relationships. So it is never something I would advise anyone to do lightly.
    I also feel able to name the man who infected me all those years ago. He was Dambudzo Marechera. When I discovered he had AIDS, I went for a test to make sure I didnt have HIV. Marechera died of an AIDS related illness on August 18th 1987, a few weeks before I myself was diagnosed with HIV. He was 35 years old.

    I have spent many years full of hate for what this man did to me, although rationally I have always argued that when 2 people have consensual sex they each must take equal responsibility for ensuring it is safe. But that was 1986, people did not talk about safe sex, as I said in my interview, I was 23 years old and did not know what a condom was but thought being ‘on the pill’ was all I needed to do to protect myself. I still believe that I was equally responsible for protecting myself as he was for protecting himself but he probably didn’t feel like he had much left to lose.
    I was 23 years old and I forgive myself for not being perfect and for making a mistake and I forgive Dambudzo for infecting me.
    The most important thing for those of us who are still living is not to have let our brothers and sisters die in vain. We must continue to fight, to reclaim the freedoms and human rights of individuals living with HIV, to educate the wider population, to eradicate the ignorance which breeds stigma and shame, and TO DEMAND THAT THE TREATMENTS THAT ARE NOW AVAILABLE ARE MADE AVAILABLE TOALL OF US WITH HIV.

  12. janette

    Very powerful and uplifting interviews. Thank God?Allah for the strength of women. Love JB

  13. Abbas

    Our dear Cherynne, I’ve lost all my words and left with tears only; tears full of praise for you, tears of anger for him, tears of sympathy for millions who carry the virus, tears of helplessness for those who have the knowledge but can’t do a thing, tears tears tears.

    Love
    Abbas

  14. Angela

    I hope everyone who has the good fortune to read this piece sends out thoughts of love and understanding to a very courageous person and who knows the twenty years may become forty or more, here’s hoping!

  15. Del

    Thank you, Mpho and Cherynne.

    I’m speechless and deeply moved by your courage; sharing something so personal, so intimate that has impacted your life in such a profound way. Many of us reading this cannot begin to imagine your daily journey

    Here, in the states, we are still battling homophobia in the black community which is so pivotal to the new infection rates among black women and their unborn children….We still can’t get past the fact that some men do sleep with other men!!! And the black church has embraced a “faith-based” fairytale that has made us all less educated, more embracing of a fundamentalist/reactionary Christian ethos, and less tolerant of the sexual diversity that has always existed in the black community.

    But more than that, like everything else really wrong and awful in the world, this epidemic is about human rights, it’s about our humanity and sheer WILL to insist that we all live with dignity and have equal access to EVERYTHING we need. That’s really it for me…
    This epidemic is just a horrible reminder of the awful things we are capable of doing to each other.

    How pharmaceuticals can’t supply enough drugs due to their greed; governments can’t provide adequate healthcare/education because resources are earmarked for insane military spending and multinationals; and communities shame people into leading double lives and doing desperate things that makes life hard for us all, comes down to our ability to really love everybody on planet earth (we certainly say we do on Sunday mornings!!) and possess a “collective” willingness to make sure we all enjoy a good, healthy existence.

    My love to both of you, keep speaking, fighting, sharing your courage—we are watching, we are listening…

    One Love,
    Del Hornbuckle

  16. Cherynne – The burden lies more upon the infected individual for knowingly infecting others. What a dirty POS. He sacrificed your life (and others) for his own selfish pleasure. Very typical amongst Black men, but wow!

  17. Comment by post author

    Sokari

    Sarah@ “very typical of black men” This has nothing to do with black or white. There is no evidence that says black men are more likely to knowingly infect other men or women any more than white men. This was an individuals choice not a black mans choice so lets not get confused here please.

  18. Del

    Sarah,

    What a load of racist crap and you’ve included these incendiary articles from the Sun rag!

    How do you explain the white woman on an infection spreading spree?

  19. Nuzhat

    Cherynne,

    There is so much to say but I’m speechless. One thing I definitely know, you are making a difference in your life and others lives. You are a special person and you always will be.

    Lots of love for you and Sokari.

    Nuzhat

  20. Comment by post author

    Sokari

    Thanks Del – Re: Sarah! I should have just come out and said it “What a load of racist crap” and I am removing the said articles which are even worse racist crap – if you want to publish rubbish go do it somewhere else but not on my blog.

  21. Osheiza

    Well said Aunty C. I’m so proud of you and to be associated with you. I may not say this often enough but I love and respect you so much. Mua…..xxxx

  22. cherynne

    thank you janette abbas angela, osheiza, Nuzhat and del.

    sarah, i published my story in good faith and I am extremely angry that it should be used to support people´s racist prejudices.

    These kind of sensationlised articles are utterly misleading and completely miss the point. They divert attention from the really important issue of human rights for ALL people with hiv. Tabloids like the the Sun are not interested in justice or the truth but simply interested in feeding into peoples homophobic, racist and sexist prejudices.

    I do not agree that the “infected” person is more culpable. Every individual has to take responsbility for their own health including their sexual health. Further I do not agree with ciminalising people with HIV which is part of the demonisation process which maintains the stigma imposed on us by society.

  23. Sokari and Cherynne,

    A heartfelt thank you.

    The best of everything to you both

    DD

  24. Madeleine

    Dear Cherynne,
    Have just read all the above articles and comments from everyone… And what stands out is that we all think that you are a very strong and determined young lady! All these comments should help you in knowing that you`re doing well and never to despair… As said before, 20 years gone, and 20 years and more to come!!!!
    You are always in my heart!!

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