HIV and me: member Carl-david Stottor gives his take on living with the virus

HIV and me: member Carl-david Stottor gives his take on living with the virus

November 25th, 2012 6 Comments Features, Gay News

I’m certainly not afraid to stand up and be counted, about any aspect of my life, including being HIV positive. I was there back in the 80s when HIV and Aids first reared its ugly head, mostly amongst the gay community. People were dropping like flies.

The gay community were blamed by many for causing Aids and HIV, because of our mostly free attitude towards sex, but mainly I think this was just plain ignorance and bigotry. The word ‘gay’ comes from an abbreviation, meaning ‘Good As You’, but during this time it took on a more meanicing meaning: ‘Got Aids Yet?’

The ads on TV in the UK were quite frightening, ‘Don’t Die of Ignorance… Aids Kills’, with pictures of tombstones. Back then there was no medication available: if you became HIV positive, you died, it was that hard-hitting. The gay community, or rather strength of community, was strong back then; we looked after our own and did fundraising and campaigning long before any goverments got involved. It took a while for people to understand that HIV and Aids didn’t discriminate, that it didn’t just affect our world and community; only people discriminate.

Nobody deserves HIV and I don’t think that anyone goes out to look for it. It’s a bombshell when it happens for most people, gay or straight. I was diagnosed 15 years ago. I thought that was ‘it’, that death was imminent, especially as I have diabetes too. I thought HIV was just HIV, I didn’t realise there are different strains of the virus. It turns out mine is a slow-proggressive strain, which nobody told me about until three years ago when I first started antiretrovirals [or ARVs, the medications that fight HIV].

The side effects were awful the first six months; constant vommiting, loose bowels, the medication reacted against the diabetes, which eventually had to be changed. My current medication is once-daily and seems to be working, but my short-term memory loss is one side effect, which bothers me greatly. People assume that ARVs save you but they don’t; they just help prolong life. They’re not a cure for HIV.

In my eyes and experience, HIV and Aids has not so much been forgotten about, just swept under the carpet, out of sight. We seem to campaign for more awareness towards every other STI. These days, people seem to think that it doesn’t matter if you become HIV positive, that ARVs will save you, keep you alive, like a miracle cure. They do keep the HIV at bay, for a while, but not always, and although there are many combination therapies out there [the different mixtures of drugs available], not all are suitable for the individual and they require strict adherence.

Then there’s the mental health side aspect. A friend of mine once told me, long before I became HIV positive myself, that you died two deaths with HIV; as well as the physical there’s the social one, which causes a lot of stress, angst, depression, loneliness, fear, the constant threat of dying, whereupon you are labelled a ‘poxed up one’, like it’s our own fault, as if anyone of us would knowingly allow ourselves to become infected.

The other thing I learnt, was that HIV positive people don’t want more time for themselves, but the time others can give them, with love, compassion and understanding, especially when they may have been made outcast by so-called family and friends. Nobody should have to die alone and unloved. I have lost many friends over the years to HIV and Aids, which can be very draining. I have no HIV positive friends left; I’ve outlived them.

I saw no point in worrying about my HIV, so I didn’t, just took it on the chin. I went through the dirty, worthless feeling, mostly because of family reaction and innaction, I analysed everything the day I was diagnosed, sitting alone on a pebbled beach… I never cried, never felt remorse… becoming HIV positive gave me a focal point and taught me to appreciate my life. It showed me how precious, how beautiful I am. It taught me life, which is precious for all of us.

I’m upfront about my HIV and I face rejection all the time, but HIV doesn’t bother me, it bothers other people more, which I’ve learnt to deal with. Mentally, what affects me most is losing my friends… 23 funerals in three years… not good. My only responsibility is to protect others from my illness and that’s easy: I’m single and sexually innactive! I’ve still got a lot to learn, I’ve still got a lot to give. I’m not dead yet, thankfully! ♥

What do you think of Carl-david’s story? Please leave your comments below. Is your experience of HIV the same or different. If you want to get in touch with him directly, check out his profile on here.

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6 Responses

  1. Tara

    April 26th, 2012 at 10:26 am

    Hi Carl-david, thank you so much for sharing your st”ory. I don’t have any experience with HIV but I totally related to how you dealt with it. When you said this: becoming HIV positive gave me a focal point and taught me to appreciate my life.” , I said YEAH! Why give yourself a death sentence, live and appreciate life! I’m taking that on board.
    Thanks again for sharing!!

  2. mfundi

    May 2nd, 2012 at 8:58 pm

    wow um yo story inspired me…. wish south africans can all read yo story…….talked about challenges of discrimination and stigma

  3. Alan

    May 16th, 2012 at 7:19 pm

    I’ve known Carl as a friend for more than twenty years, and I don’t know anyone who possesses a braver or livelier spirit or who, in spite of everything, retains such a great sense of humour. He has lead an extraordinary life and is writing a memoir of it. He is a very good and vivid writer and I can’t wait for him to finish it – it will be a great inspiration, not only to other gays, but also to all who are struggling with their own difficult and painful lives.

  4. renato machado

    May 23rd, 2012 at 11:02 am

    “ust swept under the carpet, out of sight”
    I totally desagree, besides, must be at the order of day. I am 23 hiv+, so many losses, so many pain, discrimination along my those years and the reality of UK isn´t the same here in Brasil neither in USA and will be so selfish if you forgot those that are living in Africa, special de sub sahara region or those with hiv at an arab country where they can be kllied just for beem hiv due the fact only gay people can contract hiv at the arab countries and been gay has his price: they life.

  5. carl david stottor

    May 27th, 2012 at 9:46 pm

    Dear Renato.

    I count my blessings every day, realising that there are plenty of people in this world, much more worse off than myself, the ignorance and bigotry that I have faced with HIV, is nothing compared to others in less tolerant and hostile countries, where being gay or hiv carries the death sentence, which for me is both appalling and inhumane and is a crime against humanity.

  6. Phillip Brewster

    January 4th, 2013 at 3:08 pm

    Thanks Carl for sharing your life experience. I am HIV – and thankful for not having that problem in addition to the other health problems that have plagued me over the last 45+ years. The fact that you has no influence on my love and appreciation for you as a real live person. HIV and AIDS are fear factors that don’t hit me as a negative factor in life. As a former RN I am not afraid of it. It can raise its ugly head on any of us. I have been gay my entire life and have no desire to change who I am. I only hope that you can love me equally. I share your joy in your life.

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