Tag Archives: Diagnosis

Year One

Today marks exactly one year since I was told that I was HIV positive. At a clinic in Berlin, near to where my boyfriend and I were living last summer, the results came back from a series of blood tests that were done the previous week – one of which was a HIV test.

It’s been an interesting year, I’ve gone from understanding very little about HIV to being (I think) quite well informed and familiar with the virus I’m living with. The initial shock progressed to acceptance, and eventually to the point where I’m now comfortable enough to talk openly about it with friends, family, and total strangers on the internet.

Medically it’s not been plain sailing, I really didn’t get on well with the first combination of antiretrovirals I tried, plus a series of bizarre medical issues and reactions to antibiotics has meant that my immune system is really no stronger today than it was a year ago – but there’s some good news, my current antiretroviral combination has kept the virus suppressed for the last nine months.

On an emotional level, I’m doing okay I think, there are moments that I get down about things, worrying about the effect on my immune system of every cough and cold. I’m someone who usually likes to keep their worries to themselves, but I think one of the reasons I needed to be open about this HIV thing is because there are moments when I really need to know that there are people I can turn to for support. I’m lucky enough to have a wonderful boyfriend, amazing family, and although maybe not many friends – there’s a select few that mean a lot to me and I know I can count on to cheer me up when needed :-)

What’s also been lovely is the support from other HIV positive guys I’ve spoken to, usually via twitter, there’s a really amazing sense of community within this group. It feels good to talk to guys who’ve been through a similar experience and understand the sometimes complex mix emotions. It’s also very reassuring to talk to guys who’ve lived with the virus 20+ years and are still fit and healthy.

Sharing my thoughts openly by starting this blog has been a great experience, and has definitely made me feel much stronger and more confident in who I am. So, in to year two…

HIV testing… fears, anxieties, and education

Since making the decision to be open about my HIV status and start this blog I’ve received a lot of messages. Often they’re messages of encouragement thanking me for speaking up, some are messages with questions from people who are curious about aspects of life with HIV, but occasionally I’ll receive messages asking for advice.

A little while ago I received a message from a guy in his early 20s, he’d had unprotected sex a few weeks earlier and was now suffering a fever, sore throat and neck pains – which he’d correctly recognised as common early symptoms of HIV infection.

Doing the smart thing, this guy got himself tested. The thing is, he was absolutely petrified that the result may come back positive, and had got in touch with me because he was desperate to talk to someone who could answer the many questions that he had about HIV.

I did my best to reassure him, but it got me thinking, just how unprepared most people would be to hear that they are HIV positive. It would be fair to say that this guy may well have fallen to pieces with worry and panic if the result came back positive. He didn’t understand what being HIV positive would mean for his future, his life-expectancy, if he’d suddenly be prone to illness, if he’d have to start taking drugs right away, wether he’d even be able to enjoy sex again.

Now, when I say he was unprepared, that’s not a criticism of him specifically, I don’t want to single him out. Throughout our conversations it was clear he was an intelligent guy,  but HIV was simply not a subject he’d taken time to learn about. He’s not alone, I hold my hands up and admit I was equally clueless at the point I was diagnosed HIV positive. But I wonder, as a gay man, why did I, and why do others like me allow ourselves to be in a position that we’re completely unprepared for the possibility of becoming HIV positive?

30 years after the discovery of HIV, why do so many of us (speaking as a gay man, and for others like me) choose not to learn about the virus which is in all likelihood is going to affect us or one of our friends or partners at some point in our lives?

The guy who messaged was understandably anxious that his life was about to change, and thankfully I was able to answer his questions and reassure him that he was in a good position – even if the result came back positive then he’d found out early enough to prevent significant damage to his immune system – he would have every chance of going on to live a long and healthy life, he’d not be reliant on pills right away, it could be years before he’d need them, and there’s no reason why HIV should prevent him dating or having a safe and healthy sex life.

Thankfully, a few hours later his test result came back negative, a huge relief! However, in the short time we were chatting, his views on living with HIV changed so much, and he was at least able to picture life going on, had the result come back positive.

I worry that the fear of HIV which so often seems to be used as a method of prevention may actually be doing a lot of harm. Of course no one wants people being reckless because they’re not fussed about being HIV positive, but the current ignorance about HIV  isn’t stopping people having unprotected sex, it isn’t getting those in high-risk groups to undergo regular testing, and it isn’t stopping the spread of HIV.

Educating about the facts rather than attempting to control the spread of HIV through fear (a strategy which clearly isn’t working) could make all the difference to those anxiously waiting for test results to come back, or those who’ve been given a positive diagnosis and fear that their life is ruined. The occurrence of depression and suicidal thoughts among people with HIV is far too high – what’s wrong with letting people know the reality of life with HIV?… and that being HIV positive isn’t the end of their world?


Fellow HIV positive blogger Luke Alexander has started a campaign to make the subject of HIV/AIDS a compulsory part of sex education lessons in UK schools. You can see his open letter to Michael Gove and sign the petition here.

Coming Out, Again.

It was around a decade ago that I ‘came out’ as gay. A few people knew before then, either from me telling them, or them guessing. For a long while it didn’t seem like such a big deal hiding the fact that I was gay, why should it matter? If I want to keep it to myself then what’s the big deal? But it’s surprising how many little lies it takes to keep something like that private, and that wasn’t really something I felt comfortable with. Eventually, I needed to come out, not just to a few people whom I’d then burden with having to keep it quiet; I needed to be open with everyone.

Looking back, I think everyone in my life now would agree I made the right choice. Now, all these years later I find myself in what feels like a similar situation again.

I found out recently that I was HIV positive, and I’ve kept fairly quiet about it until now. Why the silence? For the many familiar reasons… Why should it matter to people? If I want to keep it to myself, what’s the big deal? Plus, if I’m honest, I’ve been terrified about the reactions I may get.

Perhaps some will read this and wonder why the hell I would even consider being open about it? Many of the 35 million people living with HIV today have chosen to keep quiet. Some tell a few others in their life, some tell no one at all, very few set up a website and broadcast their HIV status to the world (though I’m not alone in doing this, and I have much admiration for those who’ve done this before me).

There is of course a big difference between coming out as gay, and coming out as HIV positive. Everybody understands what it means to be gay, and I’d guess most people reading this must have at least one gay friend, family member, or colleague. Being gay isn’t an issue in 21st century Britain, there’s no stigma attached to homosexuality anymore, and nobody in his or her right mind would suggest it’s something to be ashamed of.

HIV however, is far less understood. How many openly HIV positive people are there in your life? How many openly HIV positive musicians can you name? Or actors? athletes? MPs? business leaders? There are people with HIV in every walk of life, but it simply isn’t talked about, because the people who could talk about it, who understand it, who live with it, often choose not to talk.

A mural in Ghana challenging HIV related stigma

HIV is just a medical condition, yet some attitudes towards HIV can be a world apart from attitudes towards other conditions. There’s no stigma attached to being diabetic, asthmatic, or epileptic. No one would suggest someone with high blood pressure or cholesterol should keep quiet about it.

There’s a vicious cycle of stigma, caused by ignorance, caused by silence, caused by stigma. It does nobody any good. Attitudes will only change if people with HIV stop hiding in silence.

The reality of living with HIV has changed so much since the last big public awareness campaign in the late 1980’s, “Don’t die of ignorance” was the tagline of that campaign, it’s unfortunate that despite the efforts of some great charities and organizations, so many people are still unsure about what the virus is, how it can be transmitted (and equally importantly, cannot be transmitted), and what the difference between HIV and AIDS is.

For those really not aware of the facts around HIV or how things have changed since the discovery of the virus a little over 30 years ago, I’d like to point out that I’m neither dying nor ill – and I’ll explain why that is in a moment.

HIV is a virus, most commonly transmitted through unprotected sex or infected blood, it’s not possible to catch HIV through normal day to day contact or such things as hugging or kissing, sharing cutlery or drinking from the same glass. If someone with HIV coughs or sneezes near to you, you’re not at risk – it’s not like a cold or flu virus.

What the virus does, in simplified terms, is weaken the immune system. It invades blood cells used by the immune system to find infections, and uses those cells to replicate copies of itself. Left untreated, the immune system would become gradually weaker until it was unable to effectively prevent infections. The term AIDS refers to the condition where an immune system so damaged by HIV that a person is at risk of becoming seriously ill or dying.

As I said above, I’m not dying. There have been incredible breakthroughs in treatment during the short time since the discovery of HIV/AIDS. Each and every day at 6pm I take three tablets, those tablets work together to fight the virus in various stages of its lifecycle. Last week I got the results back from a blood test, after three months of treatment, there were no detectable copies of the HIV virus. This doesn’t mean I’m cured – new copies of the virus continue to be produced deeper in my body, so I’ll be on a combination of these drugs for the rest of my life, or until a cure is found.

Three pills, one a day.

Crucially, while the virus is not running wild in my bloodstream, it’s not able to damage my immune system, which has already begun to show signs of recovering.

When my doctor first informed me that I was HIV positive I asked a number of questions, quite naively one of them was about life expectancy. His answer I think really sums up the reality of life with HIV today, “You shouldn’t worry about AIDS, you’re far more likely to die of something else”. What he was getting at is that HIV is now a  manageable condition, and most people who are HIV positive and on effective medication will grow old and die in just the same way as anybody else.

So, to bring this long post to a close. I’m Chris, I’m HIV positive, but still the same person I’ve always been, I’m happy, I’m healthy, and I hope that through this blog I can help in at least some small way to challenge attitudes about HIV.

I’m sure everyone reading this will have some kind of opinion or unanswered questions, so please comment below.

Thanks for reading! :-)