“I had a feeling you were going to say that”

…I’ve heard this line a few times now after disclosing my HIV status. I’m not at all offended – but I do find it curious, and can’t help but wonder why exactly. The first couple of times I could totally understand, shortly after I was diagnosed it was obvious I had something weighing on my mind and I guess I made a big deal of letting people know I had something important to discuss.

However, it’s happened a few times since, on occasions when I’ve disclosed my HIV status within a fairly relaxed conversation.

As I say, I’m not offended. But I guess it’s left me questioning how I didn’t see it coming. I mean, if it’s not surprising to others that I’m HIV positive, why did it come as such a shock to me?

I don’t and have never considered myself an excessive risk-taker when it comes to sex. I’ve no issue with using condoms, and having discussed this with many of my gay friends, it would seem I’ve had fewer unprotected sexual partners in my life than most.

Of course, it may only take one unprotected sexual encounter to risk HIV infection – but my point is, I’m not someone who would have frequently put myself in high-risk situations, so it should be really very surprising that I was unlucky enough to become HIV positive, right? …at least that’s my (admittedly flawed) logic.

In my time wondering about why someone might expect me to be HIV positive, one line of thought is that statistically gay men have a higher than average liklihood of contracting HIV than straight men, or women. HIV still has a strong association with the gay community. Perhaps on some level there’s a part of everyone’s psyche that almost expects HIV to affect most gay men at some point, so it’s not surprising when any gay man says they are HIV positive? …in which case, I guess I shouldn’t take it personally.

But still I wonder if it could be something about me that kinda screams ‘probably HIV positive’ to people even before I disclose.

Yesterday I was talking with someone, and mentioned I was HIV positive. His response was “I thought you would say that”, this time I asked “why?”, and his reply was something along the lines of “it’s just your language or how you phrase things sometimes. I’ve friends who are positive and sometimes you sound like them, I just assumed”.

…I didn’t question him on the specifics, mainly because disclosing my HIV status is something I still worry about, and the relief of realising I was talking to someone who didn’t see my HIV status as an issue outweighed my desire to understand what language I’d used that caused him to assume I was positive.

Perhaps for everyone that seems unsurprised when I tell them I’m HIV positive, there’s a different reason. Perhaps it doesn’t really matter now. But it still makes me think.

152 days later…

It’s been a few months now since I’ve posted anything on here, 152 days apparently! So I figure it’s time for an update…

Life’s pretty good at the moment, I had a great Christmas with family and Boxing day with the boyfriend’s family. I’ve just started a new job, which I’m very excited about.

I had some anxiety about disclosing my HIV status at work, although I don’t feel being HIV positive affects my ability to work at all, there’s always this little worry that maybe an employer might not see it that way.

I figured I’d mention my HIV status fairly early on after starting the new job, but as it happens, the moment came sooner than even I had expected, after working my way through the new employee paperwork on my first day, there came a section about medical conditions. I paused for a moment, before realising that then was as good a time as any. I’m really glad I made that decision, and I’m certain it’ll not be an issue.

After four years of self-employment and working in my own time at home (and to be honest, doing very little work lately), I’m really excited to have a proper job to go to, with colleagues and customers, rather than just sat on my own at a computer.

Work aside, I’ve been keeping fairly busy, I had a great night out in Brighton seeing Alaska Thunderfuck in October, I took my boyfriend to Disneyland Paris in November, and we also had a wonderful night in London last month seeing Wicked with some friends. Next week I’m back up in London, to see Cats this time with a friend, I’m looking forward to that. I’ve been spending a lot more time with friends lately, and I’ve made some really great new friends recently too. Right now, I’m the happiest I’ve been in some time.

Health-wise I’m doing okay, though my CD4 count just took another dip, but I’m actually feeling very well. I’m trying to learn to put greater importance on how I feel, rather than numbers on paper from blood-test results. My CD4 count has bounced up and down a number of times since my diagnosis, but my CD4 percentage has been increasing, perhaps slowly, but steadily. Importantly, my medication has continued to keep the virus suppressed.

Hopefully it’ll not be so long before my next post on here. I’m really optimistic about the next few months :-)

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…

One less pill to take

meds

Shortly after my HIV diagnosis my immune system took a bit of a tumble. I had a difficult time with side-effects of the first combination of antiretroviral drugs I was on, I also had a lymph node infection followed by an allergic reaction to the medication used to treat it. All of this left me feeling a bit weak, and my CD4 cell count dropped to 170.

A CD4 count below 200 is often associated with an added risk of developing certain opportunistic infections – two of which are pneumocystis pneumonia (PCP) a lung infection, and toxoplasmosis, an infection which affects the brain. Both are very serious, and can be fatal.

Thankfully, these infections can be prevented by taking a daily antibiotic. I was prescribed Septrin (cotrimoxazole). Septrin is the best available protection against PCP, and also provides some protection against toxoplasmosis.

While it was wonderful having that added protection against those infections, I was always hesitant about taking Septrin each day. It seemed to enhance the side-effects of my antiretrovirals, which were otherwise unnoticeable. It made my skin itchy. It made me very prone to sunburn – I’d find myself getting burnt when I’d hardly been out for long.

Most significantly, Septrin has been known to lower white blood cell counts – meaning it could be slowing the process of my immune system rebuilding.

On Monday I got the wonderful news from my clinic that I’ll not need to take Septrin anymore. My CD4 count hasn’t really improved,  but research has now shown that the risk of those opportunistic infections is far lower in patients who have sustained an undetectable viral load (less than 50 copies of HIV per millilitre of blood). My HIV viral load has been undetectable for more than six months now, meaning that those opportunistic infections pose much less of a threat now than they did when I was first prescribed Septrin.

I’m hoping now that my immune system can get on with repairing itself, and my CD4 count will begin to rise more steadily. Without Septrin I’m on just 3 pills a day, my antiretrovirals, none of which have any noticeable side-effects.

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.

Bloods again

17th March 2014

That time has come again, a return to the clinic for blood tests. My last blood results showed a slight increase in my CD4, and a viral load drop to undetectable levels.

As the months have passed since my diagnosis, my strong dislike of needles has faded (that’s putting it mildly, I once persuaded my dentist to drill and fill a tooth without anaesthetic because I hated the thought of an injection so much). This time I was actually curious, though I couldn’t bring myself to watch the needle going in, I did watch as the five vials of blood were taken.

I’ll need to get used to these blood tests, as I’ll likely be having them for the rest of my life unless a cure is found. As time goes on the frequency of the tests will decrease if results are good. The reason for the tests is to make sure the meds are working, if they are working then my HIV viral load should be ‘undetectable’ (less than 50 copies per ml), and my CD4 cell count should over time rise back to an effective level of 600+.

The other purpose of the tests is to make sure the meds themselves aren’t causing too much damage. The daily combination of antiretroviral drugs which so effectively fight HIV, can also put a strain on the body, so some of the blood taken will be used to test things like kidney function.

7th April 2014

I returned to the clinic this afternoon to get my results and discuss any concerns with the doctor. I’d actually been a little worried, as I’d not been feeling well lately and have had some discomfort in my stomach after eating meals. Since food is an important part of the absorption process for my meds, I had some concern that perhaps I might not be getting an effective dose.

Thankfully that worry was unfounded, my meds are still working, and the HIV virus in my bloodstream is being suppressed, so like my previous results three months earlier, viral load was ‘undetectable’.

This time there was no rise in my CD4 count – actually it dropped slightly. The CD4 count drop was disappointing news, but factoring in the margin for error in CD4 count tests, my CD4 count has remained fairly steady since diagnosis – so it’s not improving, but not getting significantly worse either.

Perhaps it may take some years for my immune system to rebuild, I feel extremely lucky to have those years ahead of me, even if it may be a bumpy road back to full health.

Travelling with HIV and meds

Prior to my HIV diagnosis, my boyfriend and I had spent quite a bit of time abroad in recent years, in fact we’d talked about relocating to Germany on a more permanent basis. I had worried that being HIV positive might be an added complication to our travel plans.

I was aware that travel restrictions existed for people with HIV, though I didn’t really understand where was off limits, where was welcoming, and what terms and conditioned applied – would travel insurance suddenly become far more expensive? We decided a holiday was in order, the best way to find out of HIV would become an issue in our travel plans was to plan a holiday and just do it.

Finding out the countries where people living with HIV are (and aren’t) welcome was fairly easy. UNAIDS has a handy infographic…

20120514_infographic_travel_625px

A vast majority of the countries that we’d be likely to want to visit are currently okay. Though I may like to visit Australia someday, their restrictions aren’t so bad that it’d prevent a short holiday. Russia is another country both my boyfriend and myself would love to visit, however due to the regime’s attitude towards homosexuality it seems unlikely we’d feel welcome there, regardless of HIV status.

We decided on a short trip across Europe by train. Eurostar from London, through France and into Belgium, with a stay in Brussels, then the high-speed ICE from Brussels to Cologne in Germany, a couple of days there, then a sleeper train through the night from Cologne to Berlin, and after a couple of days in Berlin a flight back to London.

I did a bit of research on travelling with HIV. The Terrance Higgins Trust website has a whole section packed with information. Taking my medication through border control was my biggest concern, I had no prescription to prove what they were for, and they are not labelled with my name. Thankfully my clinic was able to provide me with a letter explaining that the medication I was travelling with is required for a ‘chronic medical condition’. HIV isn’t mentioned, though if asked what the meds were for I’d have no issue disclosing.

travelletter

Next up, travel insurance. I expected this to be excessive, and actually the first quote we got was over £70. However, after shopping around we found a company willing to cover me for about £20, so as is usually the case with insurance, it’s worth shopping around and using comparison sites. There were a few questions about my condition, they needed to know my most recent CD4 count, and how long I’d been on my current meds.

As it turned out, no one at border control in any of the countries questioned why I was travelling with meds. The letter from my clinic gave me peace of mind though – I don’t know how I’d react if for some reason my meds were taken away from me.

I won’t bore you with holiday photos, but I was pleased to have found this street art close to our hotel in Brussels…

Image14

It feels good to know that HIV won’t prevent me from seeing the world with my boyfriend. As for the longer term plan of relocating to Germany, it doesn’t seem like HIV would be an issue with that either.

Thanks for reading :-)

Side note: A few weeks ago a group of Conservative MPs tried to introduce a bill which would apply entry restrictions here in the UK. Their aim was to make it possible to refuse entry to people with HIV, Hepatitis B, or ‘other pathogens’. The bill was not entered into law, but it’s a reminder that despite travel restrictions being lifted in some parts of the world (such as the USA in 2010), there are people fighting to introduce new restrictions even here.

A life on medication

One of the slightly uncomfortable aspects of coming to terms with my HIV diagnosis was the realisation that I would be dependent on medication for the rest of my life. Don’t get me wrong, I’m glad that this medication exists and tremendously grateful to live in a country where healthcare is free, but it was difficult admitting the fact that the only thing preventing the continued weakness of my immune system was a few colourful pills each day.

I’ve been on medication before, in my early/mid teens I was prescribed anti-depressants, and was on those for about four years, but that never really bothered me. This time was different, partly because I knew it wouldn’t be a temporary thing – I’d require these antiretroviral drugs for the rest of my life, but mostly because it meant accepting that my body in its current state was broken, unable to sustain itself, not able to keep me alive ‘naturally’.

I don’t know if I’m alone in this concern or if it’s common, and I guess it’s not an issue uniquely associated with HIV, I wonder if diabetics for example who require daily insulin injections might feel the same?

arv-bottles

After a few months of taking my antiretrovirals (often abbreviated to ARVs), I am beginning to feel more comfortable about my newest dependence. I’ve rationalised the situation as best I can, by acknowledging that I, and indeed all of us, are already reliant on so many things to keep us alive – food and water, heat, oxygen. What’s one more thing to add to the list?

I’m hopeful that in the future new treatments may make it possible to swap my daily meds for 3 or 6-monthly injections, that’d at least take away the daily reminder. But taking my meds each day isn’t something I do reluctantly, I’m not sure I’ll ever be able to put into words how grateful I am to live with HIV, rather than fall victim to it.

Thanks for reading :-)

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! :-)

Sharing my experiences of living with HIV