30 years: How much have we moved on?

I have recently been to London to do a photo project for the 30th anniversary of HIV being officially recognised. 30 positive people being photographed doing everyday things. 30 things which are poignant moments on their journeys with HIV. Myself, I chose to document my journey to and from the clinic. I was photographed on the top of a bus. The experience of being photographed on an empty top deck of a double decker bus was both exciting and exhilarating. People on other busses and on the street were looking and pointing with curiosity. I will admit, I am more than a bit of a show off. But thinking of what this photo session was for, remembering what it was symbolizing for me did touch a few raw nerves inside. I have been asked to write a short statement to be displayed below my photo in the exhibition. Here is what I have come up with: 

“Something had changed that day on the bus. It was the same driver who had taken me and brought me back, but I was not the same passenger. Over time you learn to accept the virus as just a simple fact of life, but the journey HIV takes you on is one of segregation, guilt, secrecy and depression. But it’s not all bad. My journey is also one of hope, family, community and strength. I am rediscovering myself as a consequence of HIV. I openly share my experiences online.  I volunteer my time to help those elsewhere on their journey and I never again feel I need to hide because of who I am or what I have. I have a wonderful partner, fantastic children and amazing friends. Without these things I would not have made it to where I am on my journey. HIV is something we must fight together, not on our own.”

This journey had been one of great anxiety, and symbolised a great change in my life. On my way to the clinic I had felt the same as everybody else on the bus. On my way back I felt fundamentally different. I was no longer just me. I was now me plus something else. This was the first feeling of alienation that I had experienced from my status change. If I, as a positive person could feel such a strong feeling of difference and change so early on into my life with the virus then is there any wonder there is so much stigma attached to being HIV positive. 

Personally, I had felt uncomfortable and awkward around positive people back in the early 90’s. I had felt fear and anxiety when watching films like Philadelphia and when hearing of the Freddie Mercury’s and Kenny Everetts succumbing to the virus. But I thought I had rationalised my fear in the ensuing decades. I thought I had stopped seeing HIV as something to be scared of. I had educated myself and mixed with many positive people. However, in this instance, I was discovering than being forewarned is not necessarily being forearmed. I had now discovered that the reality of being told you yourself was HIV positive was very different. Nothing could have prepared me for these feelings. My mind was racing and yet, at the same time I felt utterly numb. This was November 2009. This was a time in the history of the epidemic where there was so much hope. There was so much support. There was so much medical knowledge and yet I still felt like I had been given my death sentence. So many people had been through so much. So many had lost their lives. So many had suffered, been shunned, been rejected, been left to die alone. HIV had been wreaking havoc across the planet for over two and a half decades but only now was I truly understanding the stark reality of it. I was now part of that statistic.

This number, 30, the more that I think about it the more upsetting it is. For over 30 years people have been dying from this virus. For over 30 years people have been living in fear of social stigma. Living in fear of rejection. Living in fear of prosecution. In the UK, HIV is now seen as a chronic illness. Something that is treatable. I am more likely to die of lung cancer or terminal boredom from atrocious daytime TV or from fast food fuelled hardening of the arteries than I am from HIV. The mortal implications of HIV in the west have waned now. We are more impacted by the social and psychological impacts of living with the virus. This fact is because of medical technology. The marvels of modern medical science are keeping us alive. Keeping us with our loved ones. But they are also keeping the pockets of large pharmaceutical companies very well lined. HIV is big business! 

Don’t get me wrong. I am not ungrateful. I think that modern treatments for HIV are amazing! They are serving to not only prolong the lives of those living with the virus but also halt any further spread of it. Treatment is now seen and is being adopted as a very credible and effective strategy in the fight against the spread of HIV. You see, if your on medication (MEDS) then it works by stopping the virus from being able to replicate inside your body. After a short period, usually several months, your body cleans up all the free virus in your blood stream. This is not a cure! Effectively you still have the virus hiding inside your body, but there is little or no free virus floating about inside you. This has 2 major consequences. Firstly, you are no longer under constant attack by the virus and so your immune system is no longer stressed. Secondly, you have no virus to be passed on, making you effectively non-infective. The term as an infection control strategy is called TAP (Treatment as prevention). Here in the UK, treatment is free. Technically you will have to wait until you have had HIV for a while before meds are offered but in theory you should be able to ask to go onto meds as soon as you are told you are HIV positive.  It is a big decision as you will be on meds for the rest of your life, taking a pill (s) every day, but the sooner you begin the less long term damage there is to your immune system and the less likely you are to pass on the virus. 

Sadly, this is only the situation in a handful of countries. HIV treatment is not freely available everywhere and in many places across the globe it is still very much a terminal disease. There are still places where I cannot visit because of my status. There are still places where HIV is seen with revulsion and hatred and fear. Here in England we are taught to accept and not judge. To overcome difference and segregation and bigotry. We pride ourselves on this. But this has only arisen as a result of our developed government, health service, educational standards, secularism and welfare state. It is easy for us to have our perceptions blurred by the bubble of our own making, looking out onto a world of suffering, hunger and disadvantage. I would like to think that in the next 30 years HIV will be a thing of the past. An episode in our history which we have leant many lessons from: medical, moral and social. But going off the way I felt when I found out about my HIV. Going off how HIV is still affecting disadvantaged parts of the world. Going off the relative price of HIV medication and the current state of the worlds economy. Going off the promotion of criminalisation of HIV in European countries such as Sweden and Norway. Going off how new cases of HIV in the UK are increasing in numbers year on year I cant help but feel that things are going to get worse before they get better. 

Time waits for no man

I would like to talk about time.

To me, time seems like a bit of an insane concept of mans own making. Almost a currency. We barter our time with each other and the environment. As a child we perceive time as an eternal and immortal concept: We understand death from the ants that we crush; we accept old people as something alien to how we perceive existence. Time for a child, so it seems, is cheap. As those hormones and social pressures build and manifest, our perception of time gradually speeds up. Summer holidays appear shorter. The time between birthdays feels faster. The drive to achieve something kicks in. You slowly start to get the idea that time is a bit of an enemy. I must finish this assignment by June. I must lose my virginity this summer. I have to swim with the dolphins and climb up Matchu Pichu before I am 40. I have to finish the ironing before my husband gets home. These things all demand our time. Mundane or magical, everything that we do, want to do or hope to do is a burden on our precious allocation of time. A span which, lets face it, in the grand scheme of things is so insignificant that we are just a micro-spasm on the lifecycle of the universe. As an adult, time becomes expensive.

The concept of time bartering is a way of controlling this perception. If you have enough money and power and charismatic skill you can purchase the time of other individuals. Employ them to do the things that you don’t want to do but will directly improve your own state of being and potentially alter your own perception of time. Time flies when you’re having fun. But as children, the good times seemed to shine brightly as golden moments in our pasts. These memories, these snippets are fixed as eternal beacons in time. To be able to continue filling your life with golden memory after golden memory, with no drudgery is the aspiration of the majority of our species.

The one thing we all have that can be taken away from us is time. A man, convicted for a crime pays by spending his time in isolation from the majority of the rest of the world and society. Though the ultimate is murder or the death penalty. As social and mortal creatures this is really the only valuable commodity that we are all born with. But we are not all allotted the same amount of time. The stretch that we get is ordered and controlled by a complex mixture of genetics and environmental factors. Some are more predisposed to cancer than others. Some have addictive personalities. Some are risk averse and some are risk takers. To a lesser extent we have some control over these variables. But the sub-conscious, biology and the concept of luck are capable of throwing some very sneaky curve balls at us. Do we self sabotage? Will we be run over by a number 47 bus? Will we acquire HIV or diabetes? Or will we simply spend 40 years on a drip and life support machine suspended in unconscious oblivion and disconnected from the physical world?

The understanding of this concept of time as a commodity purveys our lives. What a waste of time that was or you might just finish something in the nick of time. And the sad thing is that we are so involved in our own lives and in the routine of day to day living that a lot of the time we don’t even realize that time is moving on. It is only the day you notice the first crows feet round your eyes or the odd grey hairs or the slight shortness of breath after climbing the stairs that you get a quick reminder that time is a ticking.

For me, getting HIV was a very sharp slap in the face and wake up call to my own limited existence. You suddenly realize that you are one day going to die. You suddenly have a potential candidate of how you might go. One minute you are blissfully ambling along, just getting on with life. The next you are hit with the stark reality of your own mortality. And you cant help, even if it is just a fleeting thought of a subconscious musing, but to think that you have caused this yourself. That you have added a further complication and constraint on your finite allotment of time. This is a rather sobering, overwhelming and daunting realisation. Many different patterns of though start to evolve from this spark of knowledge.

I must eat healthier

I must stop smoking

I must fuck as many people as I can because whats the worst that will happen to me now?

I must stop fucking any other people because I don’t want to pass this on.

I must leave some kind of legacy

I must take more time to look after me.

The list goes on and on. I guess this is something which humans are very good at. If the situation changes you evolve your approach to achieve the most desirable outcome. We are very efficient like that. But for me, I have recently had some uncomfortable brushes with time.

2 weeks ago I turned 36. Now on the surface this age doesn’t appear to be such a big issue. But I had a particularly negative idea appear in my head: If I live to be 70, which going off the mortality rates of men in my family is probably not a distinct possibility, then I have now lived out the first half of my life. I am now on the second half. The growing old half. The slide to death half. This idea caused a feeling of panic. A sense of urgency has begun to swell. If I am going to achieve anything good and great from my life then I had better pull my finger out and do something before I am dribbling into my incontinence pads. The second brush with time I have recently had is noticing the rapid changes in my kids. They seem to be growing up very VERY quickly! My daughter is changing into a young woman. My eldest son is going to start high school this year. Their self expressions of culture, music taste and fashion etc are taking form to become distinct and independent. Though your role as a parent never ends, the function as a mentor and life coach becomes less and less significant as your own children mature into adults themselves. In a way, time is running out for me to be that guide for them. Though I would like to think they will always look to me as a source of impartiality and support but once they are all grown up their ability to make their own decisions becomes self sufficient.

For now however, I think I have spent enough time writing this. After all, I have lots of other stuff to be doing too and time waits for no man.  

My World Aids Day Speech

Hi

I’m Rich. Im 35 and have been living with HIV for 2 years now

I have really struggled with this talk.

Initially I thought I would be able to come up with something to say that showed me as a strong and hardy man. A person who had faced his demons, looked them in the eye and come out on the other side a stronger and wiser person.

Initially I felt being a positive speaker was all about putting a positive spin on being positive.

Initially, I wanted you all to like me. To see me as a beacon of hope and strength and as a person who was making a difference.

But that is not what this is about for me. This is not the reason I am being a positive speaker. I don’t want you to either like or dislike me. I just want to say what it is like, for me, to live with HIV.

I wrote a draft speech, which on the surface I was very happy with. But in reality it contained everything that I felt you guys would want to hear and nothing about how I really felt on the inside.

You see, in all honesty, I don’t think I have yet fully come to terms with being HIV positive.

In all honesty, I don’t think I have even started to come to terms with it.

In all honesty, all I have managed to do for the past 2 years is lie to myself that everything is going ok and that I have not really been affected by my status change.

Don’t get me wrong. I am not in denial

I know I have HIV. I am reminded of it every day in one way or another.

Every time I take my meds.

Every time I think about having sex with my partner, who is HIV negative.

Every time I visit my kids or speak to them on the phone.

Every time I meet  new people.

Every time I apply for a job

And

Every time I feel slightly under the weather

Having HIV is a fact that sits in the back of my mind and whispers and niggles at me continuously and it never seems to go away.

Don’t get me wrong. It is not that I don’t understand what HIV is. I grew up in the don’t die of ignorance era. I had the lectures off my mother. I saw all the news stories and have studied virus physiology in depth during my biochemistry degree. I know how it works from an intimate perspective.

Don’t get me wrong. I also know how I acquired HIV. Another fact which, up until I came to write this speech, I felt was irrelevant. I would like to say that I don’t regret my behavior which lead me to becoming positive but, in all honesty, I do!

You see, I felt so deeply unhappy with myself, in so much pain and self loathing that I went out to punish myself. I am not one of those guys who was lied to by his partner or who made a silly drunken mistake.  I am not one of those guys who played safe all his life and acquired HIV through a broken condom  or oral sex or a needle stick injury.

I took risks. Reckless, uncautious, careless and irresponsible risks.  I took these risks in full knowledge that I would probably ends up wit HIV but I was trapped in a mental state of mind that it was going to happen eventually anyway so it did not matter.

I found myself immersed a hedonistic world of endless sex and partying. I worked on the gay scene in a sauna so was constantly surrounded by sex. Most of my friends were HIV positive and preferred to have unsafe sex. So the inevitable happened. But me being me, I managed to not only get HIV. I also was diagnosed with Hep C at the same time.

So who had I got both virus’s off?

I don’t know. It could have been any of many

And actually, the only person who was really responsible for my acquisition of both these virus’s was me.

Do I regret this decision? Yes

Do I regret my behavior? Yes

Do I wish I had gone about things differently? Very much so!

But regrets are irrelevant right?

They are the signs of a weak person?

They show that you are not accepting the consequences of your actions.

Of course they do, that’s why they are regrets and anybody who says that they have no regrets is a liar. It is normal to go through the “what if” scenarios. To look at the colour of the grass on the other side of the fence. To imagine how things would have turned out if only you had made a different decision. 

The news of the double diagnosis hit me hard.

I had got what I asked for and there would be no going back.

The following 18 months of Hep c treatment. Going to the clinic every 4-6 weeks.

Dropping out of my PhD as a result.

Working as a escort to help pay my bills

The depression. The weight loss. The mood swings.

Pushing my family and friends away

A year into my diagnosis I was 50 kilos. I had lost over half my body weight. I could not eat much and had constant chronic diarrhea. I could not concentrate on much, was constantly tired and to be honest, I was about ready to give up.

In the space of a year I had gone from a first class graduate and PhD student. A lively and vibant man on track to an exciting career in academia to a weak, sick, skinny rent boy living in a squalid cold bedsit in Liverpool.

The decision to start me on meds sorted my body out.

The Man who I share my life with now sorted my mind out.

Without these two things I really believe that I would not have made it into the new year.

I am a dad

I have 3 amazing kids

They do not know I have HIV

They do not need to know as they are too young and at the moment my HIV is not making me ill and my meds give me no side effects.

They did know about my Hepatitis. But this was while I was on my treatment and underwent dramatic weight loss and mood changes.

Being a Gay dad in itself throws up its own interesting set of questions and puts you in a powerful dichotomy. You want to go off and live the care free, glossy magazine hedonistic gay lifestyle. The bars. The clubs. The holidays. The sex. The drugs. But you also have to keep a foot firmly planted on earth. To be a responsible role model for your kids. My decision to take both feet off the ground and dive into a purely gay lifestyle for a while back in 2009 was based on my own selfish need to run away from all the problems in my life. Historically I am very good at this. Running away. I recognize that now. I think deep down I can be a very selfish man.

I would have liked to have thought I was gonna be this strong man up on the stage spouting how i had overcome adversity and stigma and held my head high… but i think the reality is that I have not yet properly dealt with being positive yet. I feel strong and i come across like it isn't bothering me but deep down i know that is just a clever deception

The man I am today. The Rich you see before you is a very different person from who he was a few years ago.

On the surface I seem to be a lot more confident.

On the surface I seem to show that being HIV positive does not affect me

On the surface I appear to be an open book and that my life is on display for all to see.

However.

On the inside I am seriously messed up

On the inside I have really started to stress and worry and care what others think of me

On the inside I am very scared and insecure

I find it easier to talk about other peoples problems.

To offer strength and support to everybody else who is in a crisis

To give guidance to those who seem to have lost their way.

I find these things easier than having to sort out my own problems. That would require me to acknowledge that there is something wrong in the first place.

I feel that getting up here today and telling you all this is my first step to really coming to terms with my status. For once I have stood up and acknowledged to myself that I am not alright and that it is not all a bed of roses.

But do you know what.

It could be a lot worse.

I have a great man who loves me

I have 3 kids who love me

I have some amazing friends who love me

I have everything a man needs to help me get through any problem.

I feel that I have found a place in a community where my voice does make a difference. I am not ashamed of being positive.

My positive attitude towards HIV and the fact that I am so open about my status does seem to have resonated with many others.

The blog that I write, while it serves the purpose of providing information to others about living with HIV is also in a way quite cathartic for me.

And recently I have started to volunteer for THT.

Right now I look after myself. I eat well. I work out. I drink and smoke less. I have never looked after my body so well as I do now. Is that just my age or is it the knowledge that I have a life long chronic illness? It does seem a bit sad if it is the latter. I mean, why does it take a virus to make me look after myself better? Go figure.

I am horrified at just how ignorant many still are about HIV and how there is still such a stigma attached to something which has been around and in all our lives for 30 odd years. It is the stigma which I seem to have focused on most in the past 2 years. Probably from my own fear of being judged. The way I see it is if I can make everybody see that HIV is not something to be feared and that is it just a fact of life for us all then it will prevent me from having to go through the pain of rejection, isolation or being shunned. Fortunately I live in the UK. I don’t think my liberal attitude and open expression of my status would be looked on in the same way in many other countries across the planet.

I think I was foolish to believe that coming to terms with being positive was a quick and easy process but feel that after today I am a little bit closer.

I have recently had a phrase tattooed onto me:

What doesn’t kill us makes us stronger.

HIV most probably isn’t going to kill me.

But is it making me stronger?

I don’t know. But there is something about the phrase that gives me hope. 

Sex and SeroDiscordancy for Positive People

One of the biggest dilemmas and hurdles facing both newly diagnosed and many long term diagnosed positive people is the question of sex. After all, HIV, in the majority of cases, has been transmitted though some form of sexual contact. As a result I have seen many people go through long periods of celibacy. When I have asked them why they are not having sex any more the answers are invariably one or several of these responses:

1.     I don’t feel very sexy any more

2.     Its sex that got me into this situation in the first place!

3.     I have lost my mojo

4.     I am worried about giving this to somebody else

5.     I am scared of being rejected so its easier to not bother trying

6.     Whose gonna want me now anyway?

7.     I feel dirty and tainted

8.     I don’t want to talk about it

Given the circumstances, most of these responses are pretty understandable. I mean, nobody asks for HIV (Apart from the bug chasers, but that’s a different story), so coming to terms with having a sexually transmittable long term condition is going to, at least in the short term, give you a sense of apprehension and almost phobic response to any sexual activity.

So how do we get over this hurdle?

Because positive people can and do go on to have very healthy sex lives and normal, argumentative, bickering, loving, sharing, monogamous or open, committed, understanding and passionate relationships. The kinds of relationships that they were having before they acquired their little additional passengers.  The difference is that they are on the other side of the equation now. Before hand, it was their responsibility to protect themselves from acquiring any STI’s. Whereas now, they have the additional responsibility of not passing on the one we which know we have. The prospect of infecting somebody that we love, a soulmate, a life partner or a spouse can become such a burden for some. But what we forget is that it is not just our responsibility to try and prevent the spread of HIV. It is everybody’s, and that includes our partners, though this little fact does not always help or seem apparent. Being in a relationship with a HIV negative partner therefore can be strained to say the least. This dynamic is called “Sero-Discordancy”. In an earlier blog I talked about SeroSorting and how some positive people choose to only have sex with other positive people.  This decision is not always quite so easy or straightforward. What if you find  “The One”? What if you meet that person who presses all the right buttons, makes you want to hold them all night, fuck them senseless all day. Makes you laugh and feel totally at ease with yourself and accepts you for the person that you are.

What if that person is HIV negative?

At what point do you tell them that you are positive. Will this ruin the relationship?

At what point will your discordancy of status start to cause problems in the relationship?

At what point will you give them the virus, infect the person you love?

At what point will you start to get ill and will they have to watch you die?

At what point did you become so worried about what if’s and maybe’s?

We can drive ourselves insane trying to think of all the possibilities and eventualities. The simple fact of the matter is, if you love each other no obstacle is great enough and no hurdle is high enough for you to deal with. If you are right for each other then the fact that one of you is HIV positive is besides the point. Having HIV does not make you any more or less of a person. It does not make you a different species. It does not make you any less human. The only thing that should matter is that you trust each other and understand the boundaries that you are both going to set and the risks that you are both prepared to take, as a couple. This way you are both going into the relationship with your eyes wide open and with a shared sense of responsibility for the possibility that the negative partner may at some point acquire the virus. Of course, how you manage the risk is between the two of you.

Transmission risk is not the same for all sexual activities. The most successful approach to date is to always use a condom, but there is still the risk of the condom failing or the “Drunken/off your face, OMG we fucked without a condom” scenario. The risk of transmission is also different dependent on if you are a top or a bottom (Of course straight couples don’t really get much of a choice in this decision). Whilst penetrative sex is a high risk activity whether you are a top or a bottom, the risk of transmission is greater for the receptive partner if he is negative and the top is positive. Don’t go thinking that you are free from risk if you only Top, your bell end is capable of directly absorbing the virus! All I am saying is that the risk of you getting the virus by topping is lower. This risk is significantly reduced even further if the Positive partner is on anti-retroviral meds, is adherent and has a sustained undetectable viral load (the amount of virus floating about in his body). However, there are still studies going on to determine if there is a correlation between blood viral load and the viral load of other bodily fluids such as Semen for example. Of course, sex doesn’t just have to be about the pokey bum fun though does it. There are plenty of other things which are even lower risk or risk free for HIV transmission that a serodiscordant couple can get up to. There is  oral sex and fisting, which both carry a massively reduced risk but in addition I am not going to go into a big list of non-penetrative role playing and BDSM activities. I’m sure you all have a pretty good imagination. The point I am making here is that there are many ways you can continue to have a very healthy and active sex life as a HIV positive person with a HIV negative partner (S).  Be that through safe sex or through managed risk, Don’t become a Monk or  a Nun just because you are poz, lifes too short and just think of all the great sex you will be missing out on!