Archives for the month of: January, 2011

It is peculiar how life turns out when you think about it. We plan for so much in advance, yet it is generally the decisions made in an instant that shape our lives so much more profoundly. I would never have foreseen that in January of 2009 how much change that year would have on me; that my entire outlook and approach to life would really be the same ever again.

The transition from 2009 into 2010 was a significant one of sorts – it very much felt like I was saying good-bye not only to a year, but to my old life whilst marking the beginning of year one of a new forever. Much like hitting the proverbial reboot button, everything was different and I was just starting to come to terms and comprehend the significance of that change. I still am, a further 12 months on as we journey onwards to the climax of the year and bid farewell to yet another year. But what has 2010 taught me and what lessons have I learnt.

On a high point I learnt how truly wonderful my friends are to me and how I should never have doubted whether they would support and be there for me when I need them – I don’t think they’ll ever fully appreciate how much their support means to me, but I love them all dearly for it. And not just old friends, but new friends also who have come into my life this year. Short as that time may be, I value these friendships as I do where time-spent has been a factor. But the true value of friendships old and new is not the only thing I’ve learnt. Some things, for instance, have not changed. I still hate the whole dating process. At the start of the year, dating was the furthest thing from my mind – I just was not in the right place on an emotional level to the notion of any form of commitment. I still have a few ghosts to put to rest, but the prospect is more open to me now. At times I guess I’m too damn impatient for my own good and want it all today. But on the other hand, the few dates I have gone on with other HIV positive guys have only proven to be as unsuccessful a pursuit as it was before I knew my own status. There just seems to be a whole host of new games to be played with lots of scared people who are unsure about their own destinies, or people who feel I should accept what is on offer to me almost as if to say that by being HIV means I should settle for second best. I am meticulous, I won’t settle for anything less, but when I meet the right guy and I get that feeling like fireworks exploding in my belly at the mere mention of his name, then I will know the wait has been worth it.

I’ve told more and more friends over the year about my status and, with each, my confidence has grown, which to me is a sign that things for me are improving and that being able to open up to those close to me is not as much of a daunting task as it was for me this time last year. I have no wish or want to be a walking billboard, but I want to reach a point were I am as matter-of-fact over this as I am about any other aspect of my life. I’ve always been a very open person; I’m not scared, or normally aren’t scared to speak my mind, express my opinion or merely be upfront with people. To be anything else frustrates me endlessly. I’ve come very close to slipping-up in front of people who do not already know, having to suddenly go quiet or change the subject quickly like I’m harbouring some dirty secret; I hate feeling like I’m ashamed of it, this couldn’t be further from the truth – I am in no way ashamed of my status. I’ve started this blog, volunteered at a local HIV/AIDS charity and I’m happy to assist any way I can in raising awareness. These advances in the outlook of my situation for me are all positive signs that I’m coming to terms with disclosure. I still haven’t told my dentist and a few friends, and the thought of disclosing in a dating situation in which I am not already aware of the other’s status/viewpoint still terrifies me, but I know I’m getting there with that one, slowly. As recently as the other day I discovered yet anther aspect of ordinary life where voluntary disclosure factors, one that should have been obvious but never hit me until after the event. When I had to recently go to a high street chemist for over the counter cold relief medicine I was asked whether I was on any type of medication before they sold me cold/flu relief sachets. Quite casually I said no, as I am not, but as I walked away the reality of the situation that one day I will be hit me. This was something I would never have ever thought of, yet it is so obvious as to why they would need to know this.

2010 has also made me realise that I’m not immortal. As the year has drawn to a close I have noticed it is harder to keep illness at bay. For someone who never used to even catch a common cold, I can’t seem to now shake anything but I suppose this merely mirrors what I have known with my counts on a steady decline all year; I guess I shouldn’t have expected anything else. I ended 2009 with a CD4 count around the 800 mark; I end 2010 with them having dropped by almost half of that. Where medication was only touched upon in speculation, I have now been told I will be on medication before the end of 2011, possibly as early as March. I don’t know how I feel about this. If it happens it happens and in the long run it is the medication that will keep me healthy and alive, but I can’t help feeling scared with regard to the impact they will have on me, both short-term and long-term, both physically and mentally. I know my consultant won’t leave me in the dark, and I have people who I trust without question to whom I can turn to for advice, but I am still anxious about it all. I’m struggling to come up with the words as I type this to describe how I honestly feel about this other than to say that I think this is what will make it all feel very ‘real’. That is not to say it isn’t now, and I’m just living in some state of denial over my diagnosis. I am not, but I think because my initial CD4 count was very close to 1000 I was told meds would not be an option for sometime. I felt relieved and never suspected that ‘sometime’ would be so soon. It gave me time to heal from the shock of my diagnosis and progress forward at a speed I felt comfortable with. I wasn’t forced into having to come to terms with my status in a short window before I had the extra stress of coping with the onset of medication. Not that living with HIV so far has been a walk in the park, but I think a lot has to do with the fact medication is for life. You never come off it. It will be the final nail in the coffin and it will become something I have to confront on a daily basis for the rest of my life, no more putting it to the back of my mind as something to worry about until tomorrow because tomorrow has too soon become today. And I don’t know if I’m ready for that.

So whilst I move through the transition of one year into the next, already aware of events that lie ahead, a lot still remains uncertain. To some extent it is that uncertainty that drives me forward whilst also leaving me anxious at the same time of what will happen and where I’ll be when I’m looking at 2011 through the same retrospective eyes as I now find myself viewing 2010.

I have no doubt that in years to come I’ll still be making the same mistakes I’m making now; falling for the wrong guys, spending way way too much money on clothing, drinking more than my body weight in alcohol and never being the last person to leave the party because I’ve already passed out in the bed of the host. I’ll look a little older – though not too much. I will be trying to act a little wiser and the worries, fears and loves I have now will be replaced with others. I do not know where I’ll be, or if I will be with anyone… these are things I just simply do not have the answers to, but the thought of things to come is what gives hope for tomorrow. For now, I’m determined to take heed of the lessons learnt and ensure 2011 will be different. If being HIV has made me realise anything it is the old cliché of taking your opportunities when they come across your path – have no more regrets – and it is now high time I put that into practice and see where it takes me. I do not believe in fate or destiny; a pre-planned existence is not something I would have signed on for. The future is not for us to know, but for us to experience. But wherever life takes me as long as I have friends, love, laughter, music – good times – and a little bit of hope for the unknown, then….then I think I will be ok.

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I’ve never been subjected to direct homophobia. I am aware comments have, in the past, been made about me based on my orientation but never directly to me, more indirect or out of ear shot.  Not that it would have bothered me – I sometimes find it amusing that other people have issues with ‘my’ sexuality, something which really has very little bearing on anyone else’s life bar my own. However today there are some who still refuse to ‘come out’ from fear of being stigmatised. I’ve always hated that term, ‘coming out’, it does nothing more than feed the appetite of some to neatly tag sections of society, identifying them based purely on their differences.

Fear of being stigmatised fuels some to avoid disclosure in all aspects of their life, even parts where there are significant legal consequences. I believe stigma is only a component of the problem. Denial, the refusal to accept something, the refusal to accept one’s HIV status is a large factor. It is quite upsetting that for some the only means of dealing with the situation is to pretend it does not exist at all. Becoming so entrenched in their own denial they now genuinely believe their own fantasy world of a virus free life. I’ve not encountered it to this level directly; I am aware it goes on. When I let my mind wander into its dark recesses, I have thought if that was the case when it was passed on to me – did he know and out of fear or denial just simply not inform me? Was he scared that I would no longer love him? I simply do not know and probably never will; such thoughts are best not dwelled upon. I never discuss past relationships with current partners in any particular detail, so he would never have known my previous rejection of someone over the very same thing.

I do not suffer from denial, but the idea of being stigmatised does play on my mind and the assumptions people will make about me based on something you would never know I had from merely looking at me. I don’t believe anyone should have to hide any aspect of their life out of fear of persecution from their peers. Furthermore I don’t believe people should feel they have to disclose to the wider society out of some sense of moral duty to be part of some campaign of awareness. Martyrdom after all, is not for all.

I now find myself at a very odd junction in life in terms of disclosure. On ‘D’ day I informed a work colleague, the senior partner at the firm where I work and my parents. Before the end of the week I had informed one of my friends. By the end of the month all the partners at the firm I work at knew; then I went quiet. I found myself in a rut, only able to open up to people with the assistance of alcohol. I wasn’t drinking to excess and I wasn’t drinking to forget. I was drinking to open up. I guess the alcohol just allowed the shields to drop and for me to say the things I struggle so much to say. Thankfully I now seem to be over needing the assistance of alcohol in this respect. But whilst I would say that for now, in some instances, I feel more comfortable with opening up and informing people about my status, that niggling gut feeling of the uncertainty of how they will respond still remains. I guess that feeling will never truly go until the mindset of society changes and I do not see that happening anytime soon. There is still far too much ignorance towards the subject. Even now, when I inform people, I still feel like a National Health Service announcement because people do not know the simple basic facts.

Out of all the character traits that go into making me ‘me’, I would say by far my ability for over-thinking a situation is my most dominant trait. And this more than anything holds me back, not only from disclosing, but also in other aspects of my life I’ve spent time side stepping issues. It is a part of me I hate, but a part of me I’ve now long made peace with and accept there isn’t much I can do about it.

Your mind can be your greatest asset, and it can be your greatest downfall. Everyone reacts differently but from the experiences I’ve shared with others living with HIV one thing is clear – we all, for a time, retreat into ourselves. Some of us cope, find the strength to speak to others and get the help we need. Others, sadly, cannot. When the world falls apart rational thought is no longer a gift for some, instead seeing no other option but to remove themselves from life altogether. I was told a story from a friend who works within the public sector; it involved a 18-year old guy who, two hours after he was allowed to leave the clinic after being diagnosed positive, threw himself from a bridge. I can imagine the fear and loneliness he must have felt in those two hours – he must have been so scared.

But what doesn’t kill you makes you stronger… I do sometimes wonder from time to time how I would have dealt with my positive diagnosis at a younger age. Say had I been 23 instead of 33. Is it my age, the fact I’ve lived and had a somewhat colourful and charmed existence and the valuable life experiences I have gained throughout my life that have enabled me to come to terms and to some degree adapt to the situation I now find myself in? When I decided to start writing this blog it was with a hope to put something out there, to help people in some way who find themselves in the same situations I find myself in now, as well as that of just over a year ago. As I know only too well, when all of the friends and family have gone and I was left to myself, my thoughts, there was nothing that made me feel so incredibly alone – your own mind can be a very isolating place to exist. It felt like I was the only person with HIV. I knew I wasn’t, but still, with all the pain and fear there was an overwhelming sense of isolation. I started to think that I would spend the rest of my life alone and that no one would ever love me; partners, friends and family will more than likely turn their backs on me. This is where the roots of stigma start to manifest – not in the thoughts and feelings of things I had already experienced, but that of what I had not, and the fear of what was yet to come. The uncertainty and trepidation of telling is what left me feeling empty inside and so utterly alone and scared. The fear was of how I presumed I would be treated rather than a reaction to how I had. I’m not saying this will always be the case and that it will never happen; maybe I have simply been lucky thus far, but all the worry I put myself through… justifiable I guess, given how this is a subject we never want to discuss in the open anymore.

To think I was so scared to tell those close to me about my status, yet now I question how I would have coped had I never spoke up. My status is not a constant topic; nor do I want it to be and in some instances it is a source of levity, but to know I can speak to any of my friends when something is troubling me or playing on my mind makes me realise I don’t have to deal with this alone. I still like walks along the beachfront, but the significance and comfort it brings me is now replaced by the same feelings I have from my friends. Each offers me something unique, yet all help me see the good when it’s all going bad. Campaigns to raise awareness and fight institutionalised stigma are all well and good, and needed, but just sometimes all that we need more, all that I needed more, was a simple gesture; a hug from friend, to be told it will be ok and that I’m still loved because sometimes it is these simple gestures of unconditional love that are the most powerful and poignant gifts we can offer one another, to make us realise that in the end we are all still human, that life is still worth living and that we do not have to be alone.