Decades on from the intial HIV epidemic, and with an ageing population, there’s as much need for a buddy scheme as there ever was.
One of the brilliant ideas that we had in the eighties, when an HIV diagnosis, and an AIDS diagnosis even more, meant a severely limited life, was the buddy system. Someone with HIV had a single person they could turn to, someone who was outside of their family and circle of friends, who was unequivocally on that person’s side, looking out for them. Whether it was social support, emotional support, practical support, the buddy was the person who was there.
Often the relationship was for life – the life of the PwHIV. At that time average survival time after an AIDS diagnosis was 21 months, and received wisdom had it that once diagnosed positive you had five years (hence the five years limit of National Long Term Survivors’ Group). Indeed the advice was “work for a couple more years and take your pension if you have one, or go on benefits before you really need to and have some time enjoying yourself before you get sick”. I was one of many who followed that advice and got through a five figure inheritance in three years.
Skip forward twenty or thirty years and there’s a small group of us still around. Many of us have no provision for the future and/or haven’t worked for long periods of time. Although the “Lazarus effect” of fighting back from illnesses that damn near killed us has meant a complete return to health for some of us, others haven’t had the same good fortune. And we’re all getting older. HIV gerontology is a field that we never thought we’d need, but survivors from the eighties range in age from their early thirties to sixties and seventies now. And we’re still learning how HIV impacts on ageing, and what effects taking the ARVs for long periods has on the body.
All of which stands to contradict the image some charities try to put across of athletic people in their thirties enjoying perfectly normal lives, their only hiccup being the shock of diagnosis and subsequent adaptation to taking a pill a day while they get on with their perfectly average “as though you didn’t have HIV” lives.
Our collective health was so good that some time ago the charities stopped the buddy service because there was little call for it and we’re living so long that a life-long relationship is unfeasible. Unfortunately, as we age with HIV, we’re encountering the problems of diseases of old age, it seems at an earlier time than our non-HIV positive contemporaries. Some of us have ongoing issues from HIV-related illnesses, or long-term damage from HAART (Highly Active Anti-Retroviral Therapy – the drugs responsible for the Lazarus effect, as opposed to ARV, Anti-Retroviral Therapy which is the drugs prescribed now).
Recent experience has shown how useful a buddy might have been: only three of the twenty-five or so pills I take each day are anti-retrovirals: the rest are to deal with the damage done by earlier drugs. I can’t walk far, and at that, I need a walking stick to lean on and to assist with balance. I’ve decided to move house to be closer to my treatment centre and to people in general (in the village I live in I made the mistake of not having three generations in the graveyard and only speak to the people in the village shop). But how to prepare the house for packing? Over twenty years of clutter and comfort shopping… I needed help in getting stuff to charity shops (I always thought a motorbike license would be sufficient and now can’t ride), and in getting rubbish to the recycling centre. Above all, I needed someone who could help me with a degree of sensitivity to the emotions such raking over the past was bound to (and did) bring up: “I bought that for John for his birthday in 2004… I’ve no use or room for it: it has to go” aren’t the easiest words to say.
The local HIV charity couldn’t help beyond giving me a list of local charities that might. Eventually the Red Cross decided that they could adapt their “discharge to home” plan for elderly people to accommodate what I needed. The “box room” so-called because it was full of boxes I hadn’t even unpacked since I moved here three years ago, sick and largely unaware of the world around me. I did little of the packing and didn’t know what was where so every box had to be gone through.
Yes, I got the job done, but no thanks to any HIV charity. It would have been easier with a buddy, someone who had knowledge of HIV, the drugs and what can happen. Someone who wouldn’t have been quite so surprised when they saw some of the printed porn (all but the good stuff went for recycling).
What I’d like to see is the charities look again at the idea of buddying. Not as a life-long relationship this time, but more task-oriented, and perhaps, for those of us who have difficulty getting about, an element of befriending (I can go months between “personal” visits – someone other than the post, internet shopping or meter-readers). And not just restricted to those of us hitting the “elderly” marker (according to some services I’ve had to deal with elderly means 50+) – newly diagnosed people, especially if they’ve found out through an HIV related illness and need help with practical things.
We need to stop putting all of our time into prevention and equality work (much as it’s needed) and start looking after our own…
You can follow Steve on twitter as @rottiesteve