To Disclose or Not To Disclose? That is the Question.

I am really open about my status. I accept that it is something that I cannot change about myself. You may even say that I am very comfortable with my status seen as I have used it as a force for change in my life. The fact that I have been HIV positive for under 2 years however still surprises me. It feels like I have had this for much longer and certainly I know many guys out there who have been positive for a damn site longer than me and still have not come to terms with it. I am not comparing my own experiences with them. This would be both patronizing and offensive. We are all different and have our own stories that have lead us to the juncture that we are in life. Mine just happens to have been just the right recipe of events, misdemeanors and situations that have instilled in me a level of acceptance and self-awareness to be able to assimilate HIV into my life in a timely fashion.

Do I see myself as different from those who are HIV negative?

Nope.

Do I see myself as disabled? A term I was told I should now identify with by a couple of other positive guys near to my diagnosis.

Nope

Do I feel any less of a person? Any less sexual? Any less full of life?

Nope

And why the Hell should I? I don’t see why I should punish myself for an event in my life which has already happened but essentially has no impact on anybody else other than me. I have not robbed a bank, murdered somebody, sewn drugs in the gut of a dog to smuggle across a boarder or mailed a white powder to a politician. So if what I have, the virus I carry around in my body is a problem for somebody else then tough. That’s not my problem, it’s theirs. If somebody sees me as a lesser person or somebody who needs pity because I am poz then that’s their loss because I really don’t need their pity or ignorance.

However, disclosure is not quite so cut and dry. Coming out as gay is a trauma in itself. Coming to terms with your sexuality and having the courage and conviction to stand up and say to the world “I’m different.” “I like to fuck other guys.” “I bat for the other team.” This, especially during your teens to early adulthood, takes guts. The world is a different place now compared to when I came out back in 1993. In only 18 years it has changed massively! The fact that there are 18 year olds out there doing the same thing now is a scary enough prospect in itself. But 18 years earlier, back in 1975 I don’t even want to think how it must have been for a young adult to come to terms with their sexuality. Growing up during the beginning of the HIV epidemic. Seeing the fear on my mothers face while she made me promise never to put my willy in another mans bottom when I was about 7 years old. Watching the scary adverts. The news stories of hundreds of gay men wasting away in hospitals. The dying celebrities: Kenny Everett; Freddie Mercury. The soap opera stories. The media had us in a grip of utter fear. As a young teenager I had it in my head that if I was to come out as gay then I was going to die of Aids. Effectively, admitting your sexuality back then was like giving yourself a death sentence. HIV was seen as something which will kill you.

In 2011, the perception is quite different. Modern anti-retroviral medications have changed the prognosis for those living with the virus. It is now described as a chronic illness and not a terminal one. As wonderful as this is there is a downside to it.  The fear has subsided. Many guys out there are so complacent about HIV because they don’t see it as something which will kill them. They see those of us living with the virus, getting on with our lives: Happy; Healthy; Grounded. They hear terms like ‘undetectable viral load’ and ‘Joining the poz club’ and ‘I’m only on one pill a day’ and think everything is going to be honky dorey.

I am sorry to have to say this but HIV IS still something which can kill you. Meds are not the ray of sunshine and beacon of hope for everybody. Some people have terrible side effects. Debilitating ones, both psychological and physical and have to go through several combinations before they find one that suits them. Many are not fortunate enough to live in a country where health care is provided free of charge, like here in the UK and HIV medication is not cheap. The pills I am on retail at around £600 per month. A cost which is paid by the taxpayer. You will never be able to be on the organ donor list or give a kidney to a sick family member or have children (unless you go through an expensive semen washing procedure). For those who are not bothered about getting HIV I would seriously think twice about whether you have considered all the ramifications which go with being poz because its not the bed of rose petals some make it out to be. But getting back to the point, Disclosure about your status is a choice. It is also a bit of a pandoras box, much like coming out as gay is. Once you open the box and tell people you can never close it again so it is a very difficult and well considered decision. Do you tell your GP? Your dentist? Your family, Boss, work colleagues? Who do you trust with this information? Will it damage the relationships you have with them? Will it damage your career? Will it affect how others treat you? Who do you have to tell legally? Who should you tell morally? It’s a fucking minefield I tell you. Fortunately for me I attended a newly diagnosed course funded by the Elton John Aids Foundation and run by George House Trust, A HIV charity based in Manchester. This gave me information about disclosure, safe sex, medications, support networks etc. Sadly, courses like this are not available everywhere and many newly diagnosed guys are left in the dark and feeling unsupported.

For me, disclosure was difficult at the beginning. I was so scared of rejection. Scared of what others would think of me and terrified of passing on the virus and being prosecuted. It took me over a year to fully ‘come out’ as Positive, even though I had a biohazard tattoo on the back of my neck after only a few weeks of  being diagnosed (a symbol which identifies a person as being HIV positive). if everybody knows my status then I figure the ball is then in their court how they want to proceed: if they still want sex; a friendship; a relationship etc. There are instances where disclosure is still a grey area though. For example:

You’re in a gay sauna and a guy starts playing with you. These places are usually punctuated with grunts, groans and little in the way of verbal conversation. It is one of their charms one might say. At what point do you say, in a room full of fucking men: “just so you know mate, im poz”????? Some might say, don’t get yourself into this kind of situation in the first place. You try telling that to a drunken man at 4am after a nights clubbing who cant afford a hotel and just wants to kill a few hours till the busses start again. Disclosure is not quite so simple. Some might say that a guy going into a sauna at 4am and having bareback sex is either positive already or ‘asking for it’. But we have all been there. We all get the horn when we are drunk. Inhibitions go out of the window. Safety is something for sober people. Once we don the Beer Goggles anything could happen! The problem here is that this is how the virus is transmitted a lot of the time. Drunken mishaps in a dark corner. So as a positive man, does this make it my sole responsibility to behave accordingly in a sauna? If that guy doesn’t fuck me he’s just gonna go bang some other guy in there. The answer, sadly is yes (and no). Were all adults here and all capable of making decisions for ourselves. It’s how we live with the consequences of those decisions that is the question we all must ask. As I have said in an earlier blog, communication is our biggest weapon against HIV transmission and disclosure is how we communicate our status. We all make mistakes and have mishaps but its how we deal with it after that is the key. But the problem here is that if you do fuck up, telling a guy in the sauna after the event can be pretty catastrophic. Trust me, I know! Having a guy shouting at you for all the hear that you should have told him you was HIV positive before he decided to bareback you, a random anonymous guy in the sauna can be pretty tough. I mean, what the fuck! If he isn’t prepared to accept the risk of any STI, not only HIV then he should not be playing unsafe in a sauna in the first place. But these experiences make you, the positive person, well certainly in my experience, all the more likely to disclose the next time. A wise man I know in town told me a few weeks ago that he treats every man he fucks as if they are HIV positive. From his perspective then he always plays safe and there is no need for discussion of disclosure of status on either side (condom breakage aside). Not everybody has such strength of conviction when it comes to safe sex though.

So in answer to the question of the Blog. For me, disclosure is the only way. It is safeguarding everyone, especially myself, against ridicule, guilt and prosecution. 

Birds of a Feather Fuck Together

For many, being HIV positive, especially in those early months and years of diagnosis can bring about a sense of isolation. Emotional, physical and sexual isolation which seems to come as a natural state, subconsciously manifested as a mechanism of further damage limitation. After all, nobody likes to be rejected. Nobody likes to be ostracised. Nobody likes the feeling of being polluted or damaged and nobody likes to be gossiped about. The upshot however is that being part of the gay community, all of these things are even more poignant. The gay scene especially thrives on sexual liberation, promiscuity, idle gossip and social jockeying. So as a result it is understandable that we go through this state.

Nobody likes to be seen to have failed or fallen from whatever pedestals they have been precariously balancing on. So the answer, in the short to medium and in some cases long term is to hide away, pretend you’re busy with something else: Too busy to go out; too busy to play; too busy for coffee; too busy to date; too busy to get on with your life! (I’m not even going to go into the way HIV can affect how you see yourself sexually in this blog. I think that needs an entry of its own!)

I can hear the cogs turning inside the heads of so many guys out there. Beating themselves up with the burden of responsibility of a virus which majority of them picked up by having fun and living care free.

If you are not coming into contact with others then you can’t pass on the virus.

You can’t cause any harm.

You can’t infect.

If you’re not coming into contact with others then you don’t have to talk about it.

You can’t be rejected

Or judged

Yes, it is our responsibility, as positive individuals to not spread infection and further the virus. I totally understand and appreciate this. But do you know what? It is not just our responsibility. That responsibility lies with everybody, both positive and negative. We are all in control of our own lives and capable of making decisions for ourselves. I chose to have sex with people who I knew were HIV positive. Does this make me a bad person for my irresponsibility? Does this make me a good person for not discriminating based on a risk? I think it just makes me a person. Whatever our motives for making a decision, they are our own and nobody has the right to judge us based on those decisions, but, the point I’m making here is that HIV should be seen as a issue for everybody and not just for those who have it.

By the way, I used the word infection earlier on purpose. I personally hate it being used in conjunction with HIV as for me it is a very dirty word, conjuring up images of green puss and weeping wounds and full hospital waiting rooms. The words we use in relation to our lives are very empowering, enabling and directive. I try to use neutral and positive language as much as possible as I feel there is enough negativity in the world already. Although grammatically correct, I don’t believe people are ‘infected’ with HIV. I believe it is something we acquire.  This also shifts the finger of blame from the person who passed it on. (Of course in some cases HIV is deliberately passed on either through rape, bug chasing or maliciousness etc. I am not talking about those cases here). HIV is after all a virus. A little package of nucleic acid coding which has the sole purpose of replicating itself and disseminating to as many hosts as possible. Do we blame others when we get a cold or the flu or a wart? I don’t think so.

So anyway, I would like to throw a couple of terms into the mix here. Poz and SeroSorting. Poz, firstly because its easier to type, but also because it is a modern identifier for members of the HIV positive community. Labeling and pigeon holing are normalised functions of society. Many of us like to think that we fit and in many cases aspire to fit into certain niche’s: Bear; Twink; Geek; Gym Bunny; Middle class; Pig; Politician etc. Many target groups are reclaiming negative labels as positive and enabling words. Lots of gay men now use Queer as a powerful and highly used label. Spaz, a word used to describe those with a disability has been reclaimed by a wheelchair manufacturer as the name for one of its products. The Poz community is diverse in background and rich in culture, class and race but is united by this one thing, being Poz.

Some will have heard of SeroSorting but I’m guessing many will not. It is a tool to enable Poz people to move on with their lives. I am not sure how prolific this has become in the heterosexual community, but in the gay community I know SeroSorting is becoming a popular option to help an individual get his head around some of the issues I raised earlier. Sero is in reverence to the serum of our blood and sorting is pretty self explanatory. Effectively this means that guys choose only to have sex with others of the same HIV status as themselves. Now this may sound like exclusivity but HIV negative people have been doing just that since the beginning of the epidemic. The problem with Negative partners doing it is that there is a period after the last time you had unsafe sex where a HIV test will remain negative even if you have been infected. For those of us who are Poz this is not a worry anymore as we already have the virus! We are all responsible for our own sexual health, whether Poz or HIV negative so whether you choose to practice safe sex in conjunction with SeroSorting is entirely up to you, Personally I hate condoms, but that is my choince. However, there is still a risk of acquiring other sti’s and, though not recorded or documented very much, the possibility of HIV superinfection also exists. This is where you acquire a secondary strain of the virus and could have serious implications (Incidence of HIV Superinfection following primary infection, Smith et al 2004).

Where SeroSorting works however is that it removes the fear of passing on the virus to a negative partner. For many Poz guys, especially newly diagnosed ones, this fear is overwhelming. At my own diagnosis I was told I was HIV positive and in the same breath, the healthcare support worker pointed to a page in a booklet and told me that I Would be prosecuted if I gave it to anybody else! As inappropriate, un-empathic and psychologically damaging that was to me at the time, it did cause me to SeroSort to mitigate this risk.

A second positive impact of SeroSorting is that it brings you closer to the Poz community. This helps to alleviate the feelings of isolation because you are mixing and socializing with other Poz guys. There are around 65,000 people diagnosed with HIV living in the UK alone with up to 25% more undiagnosed (though I don’t know what the proportion of these people are gay…). That’s a lot of people to talk to about their and your experiences, coping strategies, lifestyle changes etc and potentially a lot of people you can fuck too!!!! Of course your location is a big factor too. If you live in a small welsh mining village then the likelihood of you finding other Poz guys, that you want to have sex with, are greatly reduced compared to say, somebody living in central London or Manchester. But that’s the joy of the internet, which im guessing you have access too as you are reading this. Finding other Poz guys is very easy online. There are many websites out there. Some focused on sex, some on friendship, some on a mixture of the two. Not being open about your status is not necessarily a barrier either. There are things you can say in your profile, clues and hints you can put in which allude to your status but don’t necessarily give the game away. Personally I just say point blank on all my profiles that I am HIV positive and choose never to have safe sex. This puts the ball in the other guys court and, from experience weeds out majority of conversations that are not going to lead anywhere. But I know this approach is not for everyone and that I am a pretty brazen kind of guy. But its not just about the sex is it? Openness and honesty, with yourself and others cultures a inner core of confidence and will help remove stigma: if were all talking openly about it what is there to stigmatise?

I keep thinking I need to finish these things off with some thought or dramatic moral conclusion, but really, do I? I don’t want each entry to end like an episode of Star Trek, with the Bridge crew all sharing a joke and grinning like idiots.

That which does not kill us makes us stronger….

This is an account of how HIV and Hepatitis C changed my life for the better.

Being told you are HIV positive is perhaps one of the most traumatic, devastating and unnerving events in a persons life. The questions which run through your head, the need to blame somebody else, the feelings of failure and that it is the end. Suffice to say you leave that little room a different person. The ensuing journey back to some semblance of normality can vary in length, though some people feel they will never find any sense of acceptance.

For me, my HIV diagnosis didn't really come as any surprise. I had been engaging in very risky sex and self destructive behaviour for quite a while and though I had been getting tested regularly and thought I was mentally prepared to be told I was positive, the news still hit me like a tonne of bricks. There was no going back and no cure. Something had irreversibly and fundamentally changed in my life. To compound this, 3 weeks earlier, on the day I started my PhD, I had also been diagnosed with Hepatitis C. I knew little about Hep C, only that it was a progressive viral infection that slowly destroyed your liver and that it was something that everybody I had discussed it with was trying to avoid like the plague! Being told I was positive for 2 of the nastiest Sexually transmitted diseases within the space of 3 weeks pretty much broke me.

Unsurprisingly, within a matter of weeks I hit rock bottom, depression set in and I just wanted to give up. My PhD studies suffered as a result and I ended up taking time off. The ensuing cycle of neglecting and isolating myself, coupled with depression and the prospect of the dreaded Hep C treatment regime brought me to a juncture in my life I had never been before. I felt so hopeless, and it was only to get worse.

Hep C treatment has been compared in its severity to chemotherapy. It runs from 6 to 18 months, dependent on what strain of the virus you have and how well you initially respond to the treatment. 3 months into the treatment all of the side effects began to properly kick in. My appetite went out of the window. I felt constantly tired and washed out. My personality began to alter: short tempered; poor concentration; apathy and depression. My studies were suffering as a result so I requested a break. There seemed no point in wasting mine and my supervisors time and energy doing a half arsed job. By the time I had been on treatment for 6 months I had dropped down to 7 stone, the HIV was dragging my white blood cell counts down to dangerously low levels and I was getting lots of opportunistic infections. The decision was made to start me on HIV anti retroviral medication. Without this intervention I don’t think I would have lasted another 3 months. This one pill a day had saved my life. Within 3 months my viral load (the amount of virus particles in your blood) had dropped from several hundred million per ml to an undetectable level! During this time I had also entered into a relationship with a guy. The physical and emotional support he gave me helped me turn the corner and within a few months I was starting to look a lot more like myself.

I will talk more about Hep C, the stigma associated with it, its treatment, transmission vectors etc  in future blogs. I feel it is something that needs a lot of attention as a growing epidemic that is sweeping through the gay community across the UK.

By the time I finished my treatment I had taken a considerable amount of time off from my PhD and a lot had changed for me in my perception of what I wanted out of life. The decision to drop out of the course was vary hard and the resulting feelings of failure still bother me to this day, but I know that I made the right decision at the time. I have come out of the other side of this ordeal a much stronger person and feel, if anything, that the lessons learnt and the severity of the journey have given me a frankness and honesty about both who I am as a person and confidence to express my feelings, aspirations and fears. 3 weeks ago I received my all clear results from the Hep C treatment. The sense of relief that it has been a success was unreal but my attitude towards it as a condition has changed dramatically.

So here I am, 2 years on. I look after myself better than I ever did in the past. Go to the gym 4 times a week, drink less, take a lot less ‘substances’ and know my limits a lot better. I am completely open about my HIV status and though you may find it a little ironic, especially if you are a HIV negative person reading this post, the fact that I am positive has made me a much stronger, self aware, compassionate, accepting, impartial, healthy and determined individual. I am not proud of being HIV positive, but at the same time I am not ashamed about it either. It’s not something which is going to go away so as a result I am very positive about being positive and potentially, if I had stayed on the course of hedonism and self destructive behavior I was careering along 2 ½ years ago I really don’t want to know what the outcome would have been had I not have been forced to curb my ways by my status change. My openness has been regarded as daring, brave and by some as reckless but do you know what, I have nothing to hide! I don’t see why I should be scared of the opinions of those who choose to not to understand or live in the 1980’s and still see HIV in the shadow of the “Don’t die of ignorance” tombstone. Treatment, social awareness and positive people have changed a lot since then. I dont see it as my job to bring about awareness but I do feel it is my duty to help bring about a change of attitude towards HIV in both the negative and positive communities. Fear is the biggest enemy in both cases: Fear through ignorance; fear of discrimination; fear of exclusion and rejection; fear of transmission; fear of being judged. But fear can be easily conquered through understanding, acceptance and reassurance and as a result I will never again be scared of either the virus itself or of how I am viewed in the world.