On diagnosis I had two main concerns, one that I hadn’t passed it on, and two that I’d not screwed up my degree, a HIV positive acupuncture student, is a bit of a curve-ball to throw at the doctor
Where to start? Strangely it’s in the formatting (bare with me!) three years of university has definitely shaped who I am both in big and little ways. After countless assignments I simply can’t start any piece of serious writing without setting my document to Times New Roman, Size 12, 1.5 spacing. It’s a bit of a strange quirk, but works for me. Then at the other end of the ‘Defining Moments Scale’ we have the fact that halfway through university was when I was diagnosed, just over two years ago now.
Looking back I probably knew deep down, though I never really experienced “sero-flu”. I sweated at night, but then the accommodation had dust mite sheets (nice!) and if I’m on plastic I still sweat like crazy. I admit I’d let my usual check-ups slide since moving, new centre new people – no thanks! Whilst not exactly having a wild university experience (North Wales isn’t known for its gay scene) I did think it about time to go and be a good little gay and let the nurses have their wicked way with me. I’d made some very close friends during my first year so in October of my second year I made my appointment and a friend came with me, mainly as an excuse to get out of class if we’re both honest.
After the obligatory pee-in-a-cup part the doctor asked if I wanted a HIV test. My face and response were less than enthusiastic. I’m fine with needles (be a bit of a problem if I wasn’t – more on that later) and injections. I have a big (read:huge) problem, however, with having blood taken. It’s almost the worst part of being positive. Almost. My friend loved it, apparently my blood is a consistency similar to honey or some such. Afterwards I’d like to say I didn’t give it much thought but that would be a lie. I hadn’t been particularly unsafe but I tend to worrying and so I did, or again maybe deep down I knew.
The next week I had a phone call, there was a problem with the bloods and could I pop in and re-do them please? Yes, of course, no trouble. Alarm bells ringing like mad I declined my friends offer to join me again. I go in all seems normal, then sat down and told. It’s come back positive. Of course it could be a false positive and we’ll retest to be 100% but it’s strongly positive. I’ve read a fair few stories about this bit. The kick to the guts, the tears, the million thoughts etc. I just went very hot, and then said “Ok, so what’s next?” I don’t quite know why I said that, it just seemed like the thing to say. I was given a veritable pile of leaflets, stuffed in the many pockets of my jacket as I had no bag.
I had two main concerns, one that I hadn’t passed it on, and two that I’d not screwed up my degree, a HIV positive acupuncture student, is a bit of a curve-ball to throw at the doctor but that was the second thing I asked her. She told me about the current controls on HIV+ individuals in healthcare (which have since been updated) and promised to find out if there was any specific guidance for me whilst assuring me she didn’t think it would affect my studies or future work. Then I gave her all the contacts for who might be at risk because of me as I couldn’t face the phone calls. Cowardly probably but their health shouldn’t have depended on me being brave.
I’m still surprised I told my friend that day. Usually if I have difficulty dealing with something I’m one of those annoying close down and don’t tell anyone types. I then told my other close friends the following weeks following a good visit and blood result. The first friend was amazing, very supportive and we had a discussion helping me iron out what I’d been told by the doctor. The others were not quite as helpful. They were very good in the sense they were caring and there was no judgement, however worryingly undereducated. I remember thinking “Hang on, I’m the one with the problem” as I comforted a girl sobbing uncontrollably asking if I’m going to die. Not the most tactful perhaps but her concern was touching at least. That thought recurred several times throughout the following year and a half of university. However it was usually a smug “Hang on, I’m the one who’s ill” when nursing them through one bout or another of fresher’s flu.
That’s not saying I coped well, I coped in my own way of retreating, and in the beginning there were so many dark days I didn’t think I’d ever feel halfway normal ever again. Friends tried to help, and though I appreciated their concern I just wanted to scream at the “You don’t get it, YOU’RE not positive, how could you understand?” The HIV clinic was a little better, and I’d often be there for hours, it was an oasis where I didn’t have to pretend everything was ok. Well to a lesser degree, every time I met my doctor I was absolutely fine if asked, chirpy, chatty, but at least they knew about it. It got to the point where getting out of bed was beginning to become a struggle, and I was missing classes as the idea of facing the group was just too much.
But I decided I was not going to let this condition beat me. I “gave myself a talking to” as my Uni friends would often say, I continued to study, I continued to act normal, I’m still not on meds and will stay off as long as I can and stay healthy. Some would argue for starting a regimen as soon as possible and I’ll probably agree, except this is my body. Whilst I can maintain my health then in some strange way I feel like I’m holding back against it, not letting this condition rule me. I know one day I will of course and won’t deny if my CD4 starts to dip then it’s time to bite the bullet, and that’s a hurdle I’ll face in the future.
I tell very few people, my family still don’t know, it seems like an awful lot of heartache to cause for little gain. In fact now the only people I tell are prospective partners, usually early on. I’ve had potentially amazing relationships die in the water because of it. That’s fine I get it, and now I tend to avoid the idea of a sero-discordant relationship, for my own mental health. I can’t deal with the idea that there’s a risk I could infect someone else. It’s my major hang up. That and having mannish nurses bully blood out of me on a quaterly basis. That said I have the greatest respect for those who are totally out about their status. They help remove the stigma and are infinitely braver than I!
I finished university, gained my Bachelor of Science and moved back to Cornwall to set up my own business in Alternative and Complementary Medicine (and yes I’m now fully licensed to practice acupuncture!). In no small part that was the HIV team in a small north welsh town that were the only thing holding me together for a good stretch of my second year.
I’ve not really spoke about how I contracted HIV. In my opinion this is irrelevant. Don’t get me wrong I’m all for pushing awareness, the lack of knowledge in some I’ve spoken to is truly frightening. However I think that a major part of the stigma associated with HIV are its ties to sex and drugs (and sausage rolls!). I know individuals who’ve participated in very risky behaviour and contracted it. I also know those who were in a (they thought) monogamous relationship and were infected by a partner. Is one better than the other? Of course not! Is one less HIV+ than the other? Technically only if one is on meds and one isn’t. HIV doesn’t care about our past or how we contracted it so why should we? Who are we to judge?
I intend to continue moving my life forward, as a HIV+ individual and not let it be the defining part of me.