From Epilepsy stigma to HIV stigma it feels like deja vu to me

By Andrew Goyvaerts


(Insert image taken during what was unknown by me at the time to be seroconversion, one minute I would feel and look great, next the symptoms would just flare up)

Playing with toys that had probably been donated from one charity or another, this was me at my element with a new found friend, engrossed in our play neither of us could give a flying hoot that we were at the hospital waiting to see a doctor. For a child who was 7 or 8 at the beginning of all this, it surprises me that I don’t ever remember feeling afraid of the machines, or wires connected to my head, but do remember feeling dread of the cold stethoscope and Dr. Cotter I believe his name was, burping in my face as he used it, a repetitive habit of his.

Back then there was no target time for patients to be seen meaning some days you could spend several hours waiting past your appointment time only to be told come back, so the company of another child to play with was very much welcome, especially given the company normally tended to be a lot of older people who kept trying to force feed me opal fruits or commenting on my curly hair. Both mother’s were sitting behind us speaking to one another when after maybe two hours the little boys mother asked mine why we were at the hospital, when my mother explained I had epilepsy and we were waiting to see a neurologist, without another word, the woman stood, picked up her child, walked to the other side of the room to take a seat, refusing to let her child near me again, in spite of his pleas. You see in those days epilepsy was a terribly misunderstood condition, in many ways it still is, with some parents fearing that if their child was playing with me and something happened that lead to a seizure, for example I accidently banged my head on the corner of a table etc., that child might be accused of doing something wrong.

While aware that some parents had this fear/paranoia, nobody had ever physically removed their child from my presence like this and in that moment I learned that fear can make people react in a very cruel way. Looking back the other boy was probably more upset by it than me because he wasn’t used to his mother reacting like this and often wonder what effect that experience had on him. I on the other hand had become used to the stigma that came with the condition, as well as the restrictions. Watching my brothers go off to play football with their team was one of the worst, it didn’t bother me that I wasn’t allowed to play because I liked football, if anything I bucking hate the thing, it was missing out on the social connection it provided in a rural area where there was very little else to do except play football that bothered me, then, at the age of 12 the seizures stopped and the stigma, as well as the restrictions, became much less allowing me to live a usual life for the first time and although by this stage young childhood had already past I made the most of this new freedom. In the subsequent years, as a teenager I began to cook and then got into sailing, whenever my brothers used to head off to football or into the village I would walk up the backroad from our house where there was the most perfect viewpoint and spend hours staring out at the Atlantic, dreaming of being out there, so when it started to become reality life could not have got better.

During training in Greece I took sick midway through, at first my thoughts were, “its  probably not as bad as I feel”, but when the most laidback skipper I have ever crewed for insisted on calling the doctor, knew something must be wrong. After a check up and been given the all clear to keep sailing with instructions to see my doctor at the end of the trip on arrival back to the UK, Texas Longhorn sailed on. Once home, in truth not even, I remember transferring at Gatwick when my throat started swelling up again and continued to do so over the following days while my muscles ached, the sweating was unbearable, and on top of that I had severe pain that after a couple of nights in hospital turned out to be anal fissures. More than two weeks of still experiencing pain from the fissures along with the other symptoms, it was suggested I get my regular sexual health screening early, convinced something else was wrong and concerned that it was actually throat cancer due to the bad swelling, I went to the clinic in order to tick a box so my GP would refer me to the next person

It was a Tuesday afternoon when the nurse who took my blood called to say the chlamydia test came back inconclusive and needed to be taking again the next day. Most people might have started to panic, perhaps it was me subconsciously diverting my attention away from any panic, but instead I got so annoyed.

Imagining someone must have messed up and lost the sample, I was furious at having to go back meaning it would now take longer to get the all clear so they could continue with the medical investigation in the hope of sorting all this out. Taking a seat, it took everything in me to stay composed while covering up my deep annoyance at being back, my only clear recollection of the remaining time are four words, HIV, positive, bad and seroconversion.

Since then I have began treatment, now have an undetectable viral load and good CD4 count to go with it, but stigma as well as restrictions have become a common part of life again. An intended sailing trip to the UAE had to be cancelled as they will not allow tourists who have HIV enter, certain insurance needed to race now being unattainable due to my status means I cannot partake in it as competitively as I used to, would like to and have the ability to, this is also an issue for general insurance policies such as those a self employed person might want, along with the general experiences of HIV stigma we all come by. Although these days its not mammies removing their children from my company there has been a feeling of deja vu over the last few years when talking to a guy and after revealing my status he comes out with “sorry that’s a deal breaker for me” (one of the more politer responses).

Stigma is stigma, in many ways it doesn’t feel any different if you have epilepsy or HIV, are gay or belong to another minority group but stigma is something I’m done with and what lead to the creation of this organisation. I’m 28 now, twenty years is long enough to live under stigma derived from the opinions, fears and judgements of other people, since they say I’m not going anywhere for a long time I have no intention of putting up with it for another twenty.





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