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.
I’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)