Older people with HIV and people who are long term diagnosed are being increasingly marginalised. I’ve been asked in no uncertain terms not to go on about the “old days” for fear of scaring the newbies.

coleherneI’m one of those semi-mythical creatures: “don’t worry dearie, we’ve got a guy comes down here and he’s had it more than 20 years”. About 34 years for me. Of course the test wasn’t around then, but nothing else looks like seroconversion rash, does it?

I proved lucky in that without drugs the average life expectancy amongst my friends was nine or ten years. That’s why I kept my address book on filofax paper printed out from my Amstrad PCW every month – saved me from having to see all those crossings out as people died. When my first husband died in 1992, my life expectancy was reckoned at about eighteen months and his will reflected the fact. Not complaining, just saying…

One of the very first academic, but written for the patient, books was called “Living with Uncertainty”, which reckoned on a five year life expectancy if you tested positive and were in good health. I’m afraid I can’t remember the author’s name and my copy is long lost in the many house moves I’ve since then

Having lived twenty years past my dead-by date, I find myself back in the position of living with uncertainty. Little is known about the long term effects of HIV or indeed of HIV drugs. Okay, I had bad luck when I fell out of the side-effects tree in that if there was a branch to hit I hit it. Others have been much luckier and show little, if any, long term side effects, or even side effects of the massive overdoses we took when the drugs first became available.

One aspect of this struck me recently in an online discussion of adherence: here there were people having difficulty remembering to take one to three tablets per day and how difficult it is to remember. I take about thirty tablets a day, only one of which I could ascribe to a non-HIV source (high blood pressure – and that’s debatable). If I could replace my thirty a day habit with just three, I’d be laughing and not forgetting.

My difficulty in adherence is not because of getting smashed in a bar and forgetting: it’s because I look at the carrier bag of drugs and think of the half hour it takes to stuff my pillbox. And for the record I absolutely hate blister packs: only once in my life has a pharmacist messed up, and I’d be more than delighted to get things like codeine in bottles rather than blister packs. Given that even blister packed medicines can’t be recycled, it does seem a waste to pack medicines that way.

The other problem I want to address here is what I see as the silencing of older people and the long term diagnosed. I’m not going to go into we didn’t form ACT-UP to make life easier for you (well actually we did – it was for all people with HIV), but it strikes me that older people with HIV and people who are long term diagnosed are being increasingly marginalised. I’ve been asked in no uncertain terms not to go on about the “old days” for fear of scaring the newbies.

Sorry, people, you can’t change history, and there are still some of us around who lived through it. In San Francisco there’s a new group called LetsKickASS (look ‘em up on Facebook). Their basic position is that many of us who made it through the eighties and nineties are experiencing a form of post traumatic shock syndrome, except, in true SF style they’re calling it Aids Survivor Syndrome, and including the HIV negative and HIV unknown people who helped us get here.

Lisa Power, at THT Towers, made a bloody good start on HIV gerontology, a science we never thought we’d need until it was too late. We need it now (according to social services if you’re over fifty you fall into the gerontology bracket). There’s a major history project out there waiting to be written (and then Kindled and audiobooked as well as paper-published. “Those who forget the past are doomed to repeat it” – ironic because I can’t remember who said it!

The focus seems to be moving more and more towards HIV and young people – yes, you got shitty sex education, but blame that on the government who legislated against you getting any meaningful sex/relationships education and even after the late repeal of Section 28 still allows opt-out clauses for parents. I may be weird, but knowing the specific gravity of water is somewhat less important than having the knowledge of and skill to how to negotiate what you and your partner want.

Just don’t forget those who went before you, some of whom are still living, who made the ground you tread that much smoother.

Steve (@rottiesteve on Twitter)




  1. Steve,

    I think it is vital that long term survivors have their say, and also for newbies to hear it. They may actually thn count themselves lucky!

    Much Love


  2. Steve,
    Well done for speaking up! I was thinking earlier today after 6 years on one pill a day I’ve probably consumed my bodyweight in the things. There is certainly uncertainty about the long term effects that will have and I very much appreciate the pioneering lives you and others survivors are living.

    When I was a teenager “scaring the youngsters” with tombstone adverts on TV was a damn sight more effective than not talking about things and the madness of Section 28.
    We now have a generation who believe that one pill a day has zero side effects. Forget the medical side effects there are enough social prejudices still to deal in the short term.

    Thank you,

  3. Jorge Agustín Nicolás Ruiz de Santayana y Borrás (George Santayana)- who also said only those who are dead will see an end to war…. Rather a cheerful individual at times…

    I am afraid I am going to take issue with you. – we got no sex education apart from the purely biological like atching rabbits fucking and seeing the result some weeks later and being shown a very graphic and bloody film of a woman giving birth with a scalpel used to ease the passage of the head. There was nothing on HIV (It did not exist), or on many other Venereal Diseases as they were called then. We were not told about condoms. So the bottom line as it was with us of my advanced age (65) is what is known as peer education. We learned from our contemporaries. Condoms stopped you getting the clap and syph and other things without names that were grouped under NSU. The clap clinic was hidden away at the back of the hospital and was not an inviting place.

    Using section 28, lack of sex education etc as an excuse for getting HIV is typical of a refusal of people to take responsibility for their own actions. The information is far far more readily available than it was for me. No internet. no gay magazines. The sue at a drop of a hat generations an culture imported from the USA has led a couple of generations who subscribe to the view that what has happened to then is NOT their fault. I was not told, I didn’t know it HAS to be someone’s fault. Anyone’s fault but theirs. It is all a conspiracy of big Pharma.

    My reaction is so you picked up the shitty end of the stick – well so did I. But back in the day it was a far shittier stick than it is today. Stop fucking whinging and whining and get one with things.

    As for me I will continue to point out to any consultant that tries it on that I am far more highly qualified in my fields than they are in theirs and that calling them a Doctor is purely a convention so treat me like an idiot and i will treat you like something on the shitty end of the stick by adopting my Herr Professor Doktor persona. Treat me like an equal and you will find I can be make you feel wonderful.

  4. “Stop fucking whinging and whining and get one with things.”

    You got more sex education that I did.

    I don’t believe I’m whingeing and whining: I’m trying to make things better for younger people with HIV while reminding them that the wonder-drugs that keep them alive today came from somewhere, and that we have a wealth of knowledge on how to get round what side effects do happen, and how to cope with opportunistic infections they might slip through the net.

    Writing here and at (amongst other sites) is one of my ways of getting on with things. Yeah, I picked up the shitty end of the stick, but I’m washing my hands.

  5. I am not saying you are whinging and whining Steve… Sorry my lack of clarity. You don’t try and play the blame game and neither do I. Things are as they are. We may not like it but get on with it and try to warn others and help with our own bodies to advance medical knowledge.

    The point I am trying to make is that with all the information that is now freely available compared to back in the 1970’s and 1980’s to say when newly diagnosed “I didn’t know” – “It has to be someone else’s fault” is being dishonest. You knew what you were doing getting drunk and drugged and playing unsafe in the back rooms and oh dear you got the shitty end of the stick – bless – go and play in the shallow end of the gene pool with others of your ilk.

    The information on the risks of unprotected sex is out there including various contact sites. All responsible clubs provide condoms and lube. THT and many others have posters up. I do not have a lot of sympathy for these people – especially when they try and point the finger at me. I always disclose and point out the risks. Ask one of my boys who I marched to A&E got Post Exposure Prophylaxis arranged and then ensured he would have a less than comfortable trip back to Netherlands. He is still negative. Lesson learned.

    The same as the information on the risks of Malaria, and other tropical diseases is out there.

    Unlike back in the 1980’s people are now choosing to die of ignorance. There is a pill to put it right I’ll be OK. Sorry in the case of malaria for example you have to take the pills for weeks before exposure, Typhoid, cholera, yellow fever all require vaccination weeks before hand as did smallpox.

    There are a group of people who deliberately ignore any and all messages that can protect them. These same people go out and get infected and ignore symptoms until it is too late believing they are some kind of superman or woman. 1,700 people returned to the UK with Malaria in 2010. seven of those died. It is estimated that 3,300 living permanently in the UK acquired HIV in that year around 30 died. The balance of new infections were acquired overseas. Statistics from Health Protection Agency. Around half of diagnoses were late.

    All I can say from my own personal observations is that people who choose, and I believe it is a choice, to take avoidable risks have low self esteem and see it as a way to abrogate personal responsibility for their lives. Those that I have quizzed had a belief they could party away while Social Security paid them disability living allowance, they would not have to work again, provided housing etc etc. This myth despite the real cuts the Government help for people with real disabilities persists.

    It makes me really angry in a very visceral way to see so many young people acquiring HIV with no thought to the short and longer term consequences of living the rest of their lives on medications.

  6. I hate to say this but I think part of the problem is the “no stigma” messaging, that says “my life as positive is no different as a negative person, in fact it may actually be better because now I deserve attention and sympathy.” I agree that there should not be any discrimination agaimst those with HIV. But as a 50 year old negative guy who has been terrified of sex since coming out in 1986, when I hear other HIV guys go 8n about how the virus “gave them a new appreciation for life” and has “liberated me from fear”, I think “what am I holding on to. Might as well just get7nfecred and get on with it”. If I think that at 50, what are kids at 20 thinking…

    • So the answer is to stigmatise PwHIV? A scarlet letter on our clothes? As I’ve stated elsewhere on beyondpositive I chose to adopt a stigmatising mark as a tattoo as much to say “I’m not ashamed of being HIV+” as to say “if you have a problem with HIV, you don’t want to know me”. The attention is more likely to come in the form of a good kicking because everyone knows that (irony alert!) only queers, junkies and whores get HIV and we all know what they deserve.
      I think you may be hearing the quotes from HIV+ guys out of context. When, as I was, you’re told you’ve got about 18 months left, yes, you get a different take on life: you appreciate it more, because, as the saying goes, you’re a long time dead.
      I’m the first to admit to having had extraordinary luck in surviving for so long. But don’t think that it hasn’t come at a price: Wheat my photo here doesn’t show is my lipodystrophy (fat flees the limbs to gather round the belly and the back of the neck), the fact that I can’t walk more than half a mile or so, my poor balance, my walking stick…
      True, I don’t have to fear getting HIV now, but how would I get it? I don’t do non-prescribed drugs and despite a high testosterone level (in desperation I had the clinic check it out), my libido is next door to non-existent.
      You’re holding onto your health. I suggest you see a therapist to discuss your fear of sex and start enjoying yourself.
      Finally, what kids of 20 are thinking scares the hell out of me: we desperately need a public health campaign about the dangers of HIV.

  7. I think we actually agree with each other more than you think. I didn’t phrase my response correctly.
    Obviously I dont think we should stigmatize PwHIV. What I am saying is that message that most of the HIV messaging out there downplays the negative effect of the disease. The message is “Get tested, get treated and your life will be just the same as everyone else.” It may even be slightly better in that you now have something that makes you part of a group, which for younger kids may provide a sense of belonging. They dont talk about having to use a cane to walk, or neropathy, heart problems, etc, etc. We’re nor supposed to scare them. But fear probably saved my life.

    When I came out in 1986, it was a time of tremendous fear. We didn’t even know if it was safe to kiss. At 23 years old, that fear sets the tone for your sexual life. Had I come out in 1976 or 1996, I am sure that my approach to sex would be somewhat different. Obviously, I have sex, but fear of HIV is always lurcking in the background, waiting to take me right back to 1986, probably moreso than kids coming out today. It is very tiring to carry that fear around and sometimes people just give up.

    They need to address that fear realistically. Not say, “dont worry, nothing will change.” We need to acknowledges the fears people have but not downplay the seriousness or negative implications of the disease.

    They need to start addressing that fear

  8. A wonderful piece Steve, And fully understood and appreciated, reading further down on some comments about fear or stigma, I can see part of this reasoning, but having been diagnosed myself in 2004, and just not having the time to feel fear or think about stigma due to getting on with my own life, I am now reaching 10 years living with this virus (or little passenger).

    I understand both fear and stigma that is attached to this virus, but to say by living with a positive attitude towards your diagnoses is in no way to underestimate it, nor to state it is easy, in fact a person should not take being diagnosed lightly or that your life can be the same as that of a person who is negative, you will face a lifetime of appointments, you will have to do your best to to stick to a routine of medications for life , not sticking to these routines of medication when you have started on them will have their own complications to deal with..

    Their many other factors to consider other than just a virus which will effect your life.

    As for kids having a sense of belonging to an elite group who can live their lives as normal, their lives will never be normal again, as stated for all the obvious reasons, but they can still live their lives just like anyone else without the fear of the past, a fear that their chances of survival are next to none, as it would have been many years ago.

    Personally for me to tell kids they can still live their lives like any other person is to take away part of the fear they undergo at diagnoses a fear that is still deep rooted one of survival, can I. Well yes you can still live out your life as before, its just it got a little more complicated that’s all maybe some precautions to be taken, some more than normal appointments, but ones that check you out completely, ones you will not normally receive as a negative person as often, some more health advice on how to sleep better eat healthier, their is no downplaying of anything to me and certainly not in any sites I know of etc ..

    But it is important to keep a positive attitude to your diagnoses and address the fact you are diagnosed, and when the time comes for medications yes some may get side effects some wont, as has always been stated their not compulsory,I have had none doesnt meen you wont , but stick to a good regime on them, but fear stigma can be compulsory for many. For me personally that is why a Positive attitude is given to the younger generations as it is so important as well as good sexual health Education as well as awareness to all the generations..



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