My journey

When I was diagnosed HIV-positive it was only a year after a serious heart operation, and I really felt my health was broken, that I’d not live past 50 and all kinds of armageddon-style ideas filled my head. The clocks had just gone back, the nights were drawing in, and I lay in my bed, feeling very sorry for myself for quite some time.

A number of things occured, which played out quite differently from my expectations of how things would be, living as an HIV-positive man.

A good old chum, who is generous and rich, also HIV-positive and who lives somewhere sunny, called me and forced me to accept his offer of an all-expenses-paid holiday in the sun, with him, in a swanky hotel by the sea. My partner was keen for me to go, and despite all my fears of becoming ill (my CD4 count was not great) travelling by plane for twelve hours, and leaving my beloved behind to deal with my trauma in the damp british winter, I went, and had a lovely time.

This was pivotal in a small way as I really believed I was in frail health and not able to feel healthy and well, but there I was swimming in the sea, laughing and getting a great tan not three months from my diagnosis, and all with a CD4 count that was under 250.

People have talked to me about a 'journey' that one sets out on with an HIV-positive diagnosis, and I had a series of internet-based conversations with other HIV-positive men. Many of their tales were scary, some told me that my small stature would mean that side-effects from medication would be greater, many spoke of side-effects I didn’t know about, mad nightmares, clinical depression, dizziness and sickness. Others spoke of years of depression and being out of work, and some said there had been little effect on their life apart from being able to bareback without fear of catching HIV...great!

However, one man I spoke to, and it was really quite a brief conversation, was somewhat reluctant to 'share' his trials and tribulations as an HIV-positive person, the gist of what he told me was that whatever happened to me would be different to him and that our ‘journeys' while possibly taking us to similar places, would be wholly particular to us. Somewhat cryptic and mystical I felt at the time and moved along to glean more horror and drama in an effort to steel myself for the forthcoming nightmare of the rest of my life.

I soon began my medication, the first dose gulped down with a toast and a swig of champagne. Ten months on, I am here writing this. I am, like my mystical and cryptic pal from the internet, somewhat reluctant to talk about my experiences of this disease, the physical effects at least, because if there is one thing that I have realised, it is how right this chap was, and how fully I understand his words now. My 'journey' is mine, it might be similar in some way to many other people’s, and I am sure it is also completely different too. It is hard to explain, but I suppose the point I am making is an obvious one, but one which I think in a way is quite comforting, that I do not know what will happen to me tomorrow, next week, or next year, but whatever does happen will not be the same as what has happened to other people, I will deal with it differently, I will respond in my own way, and I will doubtless have some crappy and great times, and how different is that from someone who doesn’t have HIV? Not very different at all.

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Community Consensus Statement on Access to HIV Treatment and its Use for Prevention

Together, we can make it happen

We can end HIV soon if people have equal access to HIV drugs as treatment and as PrEP, and have free choice over whether to take them.

Launched today, the Community Consensus Statement is a basic set of principles aimed at making sure that happens.

The Community Consensus Statement is a joint initiative of AVAC, EATG, MSMGF, GNP+, HIV i-Base, the International HIV/AIDS Alliance, ITPC and NAM/aidsmap

This content was checked for accuracy at the time it was written. It may have been superseded by more recent developments. NAM recommends checking whether this is the most current information when making decisions that may affect your health.

NAM’s information is intended to support, rather than replace, consultation with a healthcare professional. Talk to your doctor or another member of your healthcare team for advice tailored to your situation.