Monday, 19 September 2011

Ten Years With HIV

Posted with permission and thanks to Peter 

I remember ten years ago today.  I had a wonderful shiny new red Mini with white stripes delivered: Benjamin (Yeah, I'm one of those saddos who always names his cars).  I was also sick in bed: I had a high fever, a murderously sore throat and my glands were up.  It was a bit like flu, but it wasn't.  I remember almost jokingly thinking "I hope this isn't an HIV conversion illness... no don't be ridiculous, Peter, you're paranoid."


I'd realised I was gay during the 80s. For anyone who still thinks it's a choice: believe me, it's like being right or left handed.  Your only choice is whether to live your life as a lie or not.  However the 80s wasn't exactly brilliant timing.  I have to give it to the Thatcher government: their hard hitting Aids awareness campaign was a good response in comparison to Reagan's head in the sand approach.  The newspapers, however, were full of news of the "gay cancer" and the message seemed to be if you have sex with another man you would die horribly.  

Gay sex equated death for me.  It is hard to understate the effects of the press sensationalism on a confused, vulnerable teen during this period - particularly the hateful disgusting stories in papers like the Daily Mail.  One of my aunts who had never had a telephone had one installed.  Her reason? She didn't want to catch Aids from a public payphone.

Remember the Tombstone Images?
I lived in terror of HIV.  I was paranoidly careful when I started having sex, aged 20.  I came out to friends at university: most were great.. and then there was Joanna: "but what if you catch some terrible disease?"  Yep, *just* what I wanted to hear.  For 10 years I was convinced on some level that I had HIV, pretty much on the basis of having soaked up all these negative messages.  It really speaks volumes about the way I related to sex and my sexuality.  I know I'm not the only gay man who has been in this position.

In February 2001 I finally got up the courage and went to a grotty little private clinic in London for a 15 minute HIV test.  The result was negative.  Of course: I'd never done anything to suggest it would be otherwise.  The relief was indescribable.  I felt I had a life in front of me again.  What on earth had this crushing paranoia been about; this fear that was so great I hadn't even be able to mention it to my ex-boyfriend of 5 years?

"You pick it up!"

On 3 August 2001 I went to the Shadow Lounge in Soho.  It was an ordinary night out.  I met a cute Ozzie boy, 24, who had a week left in England before going home.  We went back to my apartment and had sex.  I was careful as usual, but careful doesn't cover all eventualities.  6 weeks later, just after 9/11, ten years ago today, I was lying in bed with the sore throat and my glands up.  On 27 November 2001 I went back to the clinic for another test, sure that everything was okay, but just wanting to reassure myself.

I still remember my utter disbelief at the result and the appalling way the woman in the clinic broke the news to me.  Her exact words were (at a mild shriek) "You pick it up!".  It was almost comical and my first reaction was to want to tell her that she needed to go on a course to learn how to deal with people.  Her English was pretty ropey and I'm not sure she would have understood.  Fortunately there happened to be an NHS doctor there on a routine visit (private clinics have to be licensed and supervised thank god) and she took me away and was far, far better.  Her opening was "Well this is very unwelcome news isn't it?"  She didn't let me go until I reassured her where I was returning to and who was around to look after me.  I left the building in total shock.  I phoned my best friends Lisa and Dominic in utter disbelief.  This could not be happening.

Rough Times

I visited a proper NHS clinic shortly afterwards and they confirmed the result.  The doctor was again superb, full of talk about good prospects with modern medication, that my life expectancy wouldn't be affected etc.  I still didn't "get" any of it.  I was a sensible, educated, professional; I didn't take drugs and have unsafe sex like so many gay men I knew.  I went off sick for 2 weeks, then went to South Africa to try to get my head round things.  Upon my return I threw my resignation from my position at a City law firm.  I didn't know what I wanted to do and wasn't thinking exactly right.  I just knew I pretty much hated my job and had enough money to get by for a while.

I went into a period of denial emotionally.  I tried to put off things to the future: it was likely to be a good ten to fifteen years before I needed treatment, if ever, I rationalised.  I was 30, I was fit, I was well.

I then didn't visit the clinic for 10 months after that until I had a chest infection.  They did some routine blood tests.  They monitor two main things for a HIV+ person (I apologise for the unscientific language):

  • CD4 level.  The higher the better.  This is the number of helper cells in your blood that fight off infections. 500 is a healthy level and reflects a reasonably robust immune system, whereas if it drops to zero your immune system is gone and you are dead
  • "Viral Load".  This is the amount of HIV in your blood.  The virus eats up your CD4 cells, so the lower the amount of it swimming around in your blood, the better.  A count below 5000 means there isn't too much of doing damage, whereas ae 50,000 is considered dangerously high
These two things are interrelated.  To give a visual representation of this,imagine a train track.  The length of the track is the CD4 level.  The longer the track, the better.  If it's a really high number, at first glance that is superb, as you've got ages before reaching the end of it.  The viral load is how fast the train in travelling down the line, eating up the track.  The slower the train is going the better, obviously.  If the train is hurtling along really fast this is bad news.  In such a case it doesn't matter much how long the track is: it will soon reach the end of the line.  Hopefully that makes sense.

God I loved Playmobil as a kid!

My CD4 had dropped from 591 to 181 in those 10 months.  Below 200 is "Aids defining" - you are at risk of developing infections that your body is no longer capable of fighting off and you are particularly susceptible to certain Aids related infections.  In other words my length of train track had been eaten up incredibly rapidly.  The reason was my viral load was up at 1.2 million.  This was effectively off the scale: this was a German InterCityExpress train tearing along at full speed.

I had a mark on my leg: it was cut out and later confirmed as KS, the Aids related cancer.  I was going off to Australia for 3 weeks; when I was told I should start HIV medication immediately.  I had both Aids and cancer.  Double whammy.  Nonetheless I had a lovely holiday in Australia before coming back to dark, cold, wet London.

The night I got back I tied a plastic bag over my head and tried to suffocate myself.

The Rest is History

For whatever reason I couldn't go through with it: instead the following morning I drove down to Hampshire to see Mutti and blurted everything out at 6.30am over a cup of tea in the kitchen.  She looked after me just like she had done when I was a small kid, bless her.

I then started on the drugs, well aware of the all the horror stories of side effects.  I felt claustrophobic, terrified: I hated the idea I had to poison myself until the end of my days with powerful drugs if I wanted to stay alive.  I was scared I was going to turn into an "Aids skeleton" - losing the fat from my face; or having terrible stomach upsets and cramps I'd heard about.  To anyone starting on treatment: NEVER read about side effects on line.

What actually happened was nothing.  Nothing in the way of side effects that is.  Apparently around 95% of people don't actually have any ongoing ones after the first few weeks of treatment.  I was very lucky and had none at all at any stage.

My viral load (the speed the train is going, remember) slammed to a halt.  It went from 1.2 million down to undetectable within 6 weeks.  That means that there is so little of the virus in your blood they can't accurately see any of it under a microscope.  The brakes had been put on the train.  They have remained on for 8 years now: the virus is still undetectable in my blood every test I have (I go four-monthly for check ups).  The virus is still in my body: it hides in certain places (I think in some glands or possibly the brain), but cannot be found in the bloodstream.  It's like banging moles over the head with a spade: I have to keep taking the drugs, or very rapidly it could come back and the lawn would be covered in mole hills again.  They're hiding deep underground, and should stay there I keep taking the medication and it continues working so well.

This application of the brakes then allowed (if you'll permit me the ongoing Playmobil train set references) the engineers to work on rebuilding the train track.  My CD4 gradually notched up: 230, 300, 450, 650, 800.. It's been in the 800-900 range (remember 500 is a good healthy immune system) ever since.  The train has stopped dead and I have a long line of track ahead of me.

What HIV Means to Me

Well.  In physical terms, HIV means taking one tablet in the morning and two in the evening.  I am a very fit, well 40 year old man.  I'm 6'1, I'm 13.5 stone, I have a 32" waist and I if I haven't been at the pies I even sometimes have a 2 pack :) My blood pressure is absurdly good (100/60) and my cholesterol is healthy.  Those of you reading this who know me, know that I am healthy, look well, and am well.  I get the odd cold: everyone does.  Thanks to the drugs, I throw them off in the usual way.  Since being on medication I really have never had any health related issues.

One white one (am); one white, one yellow (pm)
No one knows the long term prognosis. On the basis of the last 10 years though, I'd say I'm fairly confident it won't be HIV that kills me: it is much more likely to be any of the things that anyone will face that will end their days.  Who knows: there are possible problems associated with taking drugs for this length of time; on the other hand my very fit father dropped dead at 60 training for a marathon.  Death comes.

Emotionally things are more complicated.  HIV is everything and it is also nothing.  I believe life is quite a lot like a monkey throwing shit at you.  You can try to avoid the monkey, but they're sometimes pretty good shots.  All you honestly do is to try to deal with the shit that does hits you: that is within in your power: the rest is not.  I literally wanted to die when I felt the overwhelming sense of shame and failure that being HIV positive represented to me.  I almost let it destroy me.  Out of the biggest breakdowns can come the biggest breakthroughs however.  I don't believe life is ultimately about being comfortable and being well off materially.  It is about what we learn, how we deal with others and about our personal integrity.  It is for me a spiritual journey, even though I am far from a believer in God. 
Life: shit throwing monkeys
HIV has made me seize my deepest demons in life and deal with them.  I have learned so much through this whole process.  I have been able to help at least a dozen gay men who had recently been diagnosed with HIV themselves through chatting to them online and then on the phone.  It was the spur for me to leave a job I hated, to move to the country, to get dog I so dearly wanted, and to try to create a business and a life I could be proud of.  I still face huge challenges (particularly on the business front) that I really could do without, but hey that's life.

I believe there is a very strong link between our emotional well-being and our immune systems: they are somehow linked perhaps in ways we don't understand.  The drugs are the single massive factor in my being well, but my outlook also is a big factor.  At the point where I *really* accepted that I had HIV and stopped hating taking the tablets, but instead looked forward to having them each day as a way of keeping myself well, everything changed for me.


Relationships are complicated.  It is like the proverbial elephant in the room, being HIV+.  I went on a date with a boy this Thursday.  It was wonderful: the excitement of meeting someone knew, finding out you have things in common, enjoying a lovely supper, having a sweet goodnight kiss, hoping I'll see him again soon.  All of that simple innocent enjoyment is tempered by the inevitable.  When to bring up my status?  Obvious options are:
  • At the start, thereby adding a huge weight and significance to something that might well not lead beyond a couple of dinners or a movie together
  • Before having sex, thereby freaking him out and making that experience artificially difficult and angst-laden.  This is despite the logically non-existent risks of having sex with someone who has an undetectable viral load even if a condom were to break (if there's no HIV in my bodily fluids I can't transmit it to anyone: with some important caveats set out in the link)
  • After having had sex a few times - thereby provoking understandable anger that he wasn't told; but also realising that many gay relationships don't last beyond a few weeks anyway and so it is worth the possibility of killing it off through all the drama?
  • At the point where the relationship gets serious, thereby even further adding to the sense of betrayal and possibly also throwing into doubt the whole sense of trust that has been built up
Frankly there's no simple answer.  I wish I knew how best to deal with this - but what I *do* know is it complicates matter and my instinct always is to be upfront and straightforward.  Having been so has led one guy I really liked to ask me to sleep on his sofa rather than share the bed, and to histrionics and tears from another ("but what if you die?! - erm I wasn't asking you to marry me just yet, petal...).  To be fair I've also had several rather lovely "honestly I'm not bothered" reactions too.

The stress of not knowing how guys will react has for years tended to put me off even bothering looking for someone, I must admit - which is rather sad.  I often think it would be far easier to be in a relationship with another HIV+ man, but that isn't exactly a ready supply of them in my area who appeal to me on all other the fronts I'm looking for. 


This then links in to prejudice. I have no question that there is for many people a sense of shame at being HIV+ which is linked to the fact that it is often transmitted sexually.  It is however a virus: nothing more, nothing less.  I would not feel shameful at having contracted malaria on holiday, or cholera, or TB: most illnesses are morally "neutral".  If I had cancer people would be supportive - most, even if it had been caused by a risk factor such a smoking.

Because HIV is often related to sex though it carries that special little stigma that allows moral judgements and the application of Victorian prejudices that still prevail just under the surface in our society.  Even within the gay community I have come across the question "Are you clean?"  Think for a moment what that implies.

Frankly I am tired of this.  I don't care how many people you screw, no one "deserves" to contract a potentially lethal virus or indeed to die because they have sex.  No one deserves to be the subject of stigma and prejudice because they were unfortunate enough to have contracted a virus through the most natural and common thing people of all sexualities enjoy: sleeping with each other.  Yes, we need to educate about safe sex - hugely so - but for those who are affected by HIV, the effects of this prejudice, and the fact it continues in 2011, is just abhorrent to me.

I've therefore got to the point where I don't want to live with the fear of other people's judgementalism and prejudice.  Right from the start, best friend and probably the wisest person I know, Dominic has long been told me I needn't be ashamed despite what some others may think. He has always believed that by being open I could help myself and others in the same situation.  I've been too frightened to do this, and too worried about people reacting nastily to me.  I'm not that brave and it has taken heck of a lot for me to write this even now.

10 years on I realise, though, that the first step in countering people's prejudgment about those with HIV is talking about one's experiences, seeking to educate, and being visible.

If I and others don't "come out" people will continue to talk from ignorance.  I take my lead in this from @guy_interruptd who amazed me by blogging (and continuing to blog) on his experience of being HIV+ around a year ago now, just after I'd first joined Twitter.

I know I'll get some nastiness for this blog and some people will judge me.  A handful of people on Twitter can vile: that is up to them and I won't engage.  I know other people will feel sorry for me - this is almost as bad, even if it is meant well.  I don't want people asking me whether I'm okay and assuming that a cold is anything other than a cold.  I am *not* ill: I have a manageable condition, which in many respects is far easier to deal with (physically) than say diabetes.

Life throws up some much worse things for people than HIV has done for me - at least since 2003.  I am incredibly fortunate to live in a nation with quality universal health care and to be reacting so well to the medication.  I have been able to deal with something that had the capacity to destroy me with the support of some amazing friends, Dominic first and foremost amongst them.

Therefore if you read this, please don't tweet me to say "sorry"... I'll scream!  And @LassieOscar doesn't like it when I scream :)

(Any excuse to put a pic of Oscar in my blog)
 Specific Advice 

I also want to get out some specific advice too:
  • There are HIV positive people everywhere.  There are over 85,000 in the UK.  Think about your reactions to them and realise you don't have a clue who they may be.  I've seen 18 year olds, middle aged women, an old posh guy, a pretty young woman in a suit, all in HIV clinics.  Words hurt and reactions matter.  There are nasty things out there like potentially lethal viruses: we don't need in life to make it considerably worse by our own human interactions 
  • If you are gay and HIV-, realise that the "gay community" can harbour some of the worst, most judgemental reactions imaginable to being HIV+.  Please think about how you would feel if you had the misfortune to be "on the other side of the fence"
  • The vast majority of gay people in this country do not have HIV and will never have HIV.  Sweeping statements, for example, about dental treatment or blood bans based on group membership, rather than risk based behavioural factors, are offensive to them and serve to further stigmatise those who are HIV+
  • If you are gay and HIV- you should try to do everything to remain so.  Think about my experiences and how this literally nearly killed me.  It is not worth it whatever the temptation and pressures to have unsafe sex.  Many transmissions occur in steady relationships: talk and get tested before assuming everything is okay and stopping using condoms with your boyfriend
  • If you are sexually active, whatever your sexuality, get tested.  Had I not known I was positive I would probably have ignored the lesion on my leg.  Given the speed of the collapse in my immune system, six months later it might have been too late for the drugs to work so effectively and in all likelihood there would be a gravestone dated 2003 with my name on it.
  • Most people who die of Aids today in Britain do so because their immune system is so compromised the drugs cannot help.  Don't leave it that late.  HIV often progresses slowly; sometimes (as with me) it can be frighteningly fast.  Yes, testing is terrifying.  It will not change your status though; but it will change your knowledge.  If you are positive, it is FAR FAR better to know.
  • If you are HIV+ I want to above all reassure you from the bottom of my heart that there is life after diagnosis.  It is not just any old life: it can be a quality fulfilled, wonderful life.  Being positive is not what any of us has chosen and the path may be very hard at times, for some physically and for most emotionally.  There is, however, so much hope.  As with all things in life, much will be down to the way you react to what comes before you.
I've come a hugely long way since lying there in my bed, sero-converting on 17/18 September 2001.  This blog is a major milestone in it.  I would not have believed 10 years on how well I would be and indeed that I even had the ability in me not to let HIV destroy me and to get on with my life.  Had I known what I know now, there is no way I would have been attempting to tie a bag over my head.

I'm incredibly grateful if you have read all this way - I want to get my experiences "out there".  Here's to the many coming decades of learning, celebrating, and living.  L'heim.


Alcantara said...

Excellent, emotionally honest and extremely brave...I think and hope that all the comments you get will commend you on this article which every ill-educated and biased person should be compelled to read.

Jan said...

Thank you, that's a really great piece. A little tip for negative-results people regarding all STIs; replace the word "clean" with the word "clear". Not ideal, but slightly nicer.

And just to get on my one-time sex educator soapbox, barrier protection, barrier protection, barrier protection. For almost EVERY kind of sex. Don't assume that what you were told at school will be enough knowledge to keep you safe; try to do your own research.

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Tanya Albert said...

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Tanya Albert said...

Dr. Ekpiku God will continue to bless you more abundantly, for the good works you are doing in peoples life, I will keep on writing and posting testimonies about you on the Internet, I’m Tanya Albert, I was a HIV patient, I saw a blog on how Dr. Ekpiku cured someone, I contacted him and also got my healing, kindly email him now on or email me on THESE ARE THE THINGS Dr. Ekpiku. . HERPES . HIV/AIDS . CANCER...