“Age doth weary and the years condemn…” For positive people it should read: “HIV doth weary and the years condemn . . .”
Long-term survivors such as myself certainly have been wearied by HIV. And it’s not just the virus that has knocked us for six. The drugs, too, have taken their toll. Many of the early drugs were discontinued because of their toxicity. However, we had no choice but to take them and were left to live with the side effects.
As a direct result from taking the trial drugs, I suffer from chronic peripheral neuropathy and lipodystrophy. Both conditions are very debilitating, causing extreme pain in the case of the former and depression with the latter as it affects self-esteem.
One of the trial medications has also left me with a very rare neurological condition called superficial siderosis. Doctors know nothing about this disease; there is no treatment or cure. Sound familiar?
Another annoying part of ageing with HIV is that I have to factor more doctors’ visits than other people my age. As someone ageing with HIV, I am constantly being monitored for toxicity and changes to my liver and kidneys.
As well, I suffer from sleep apnoea, which also seems to be a common condition with men with long-term HIV. Heart conditions are amongst the most common ailments. I know this personally. I have atrial fibrillation and may need a pacemaker to remedy the condition. The HIV is also responsible for my high blood pressure.
So whilst we long-term survivors are in a good place, and we’re thankful the drugs have kept us alive, there is a huge cost. Is it worth it? You bet it is!
I was diagnosed HIV in 1989, when I was 24. It was hard to imagine any future back then. I was told I had four years to live. There was no treatment; it felt pretty hopeless. When drugs became available they came with lots of side effects.
They were keeping me alive, but not making me feel any better. I didn’t have any quality of life and was quite ill all of the time. One day I’d had enough and stopped taking them. Not long after that we got triple combination treatment, which brought great hope.
Between the ages of 24 and 35 I did nothing. When I got to my mid-30s and realised I was going to have a future after all there was a whole mind shift. I started volunteering for Living Positive Victoria (LPV) and Positive Women. My life built from there: I started going to TAFE and getting a few diplomas. Now I’m a peer support worker at LPV, which is incredibly rewarding.
Living with HIV has changed dramatically since I was diagnosed 25 years ago. The progress that has been made with science and medication is unbelievable. I am just really hopeful for people newly diagnosed that it won’t be so much of a physical problem for them.
I spoke to a recently diagnosed young woman who said after seroconversion HIV hasn’t been an issue at all. She takes her pill and gets on with life. Her issue is stigma, and dating, and all that sort of stuff.
When you’re living with HIV, the stigma, the disclosure — they’re constants throughout your life. So being positive has made me quite resilient. And like a lot of people living with HIV who have aged, I feel like I have already come to terms with death. Been there, confronted it. Not scared of it.
Living with HIV has also helped me become wise and non-judgemental. I’m now fortunate to be in a position to help others, to educate and hopefully reduce stigma along the way. HIV has dramatically altered my life, but I don’t know how else my life would’ve been without HIV.
I’ve learnt over the years, as I get older, not to blame everything on HIV. When you’re 75, health wise, things are going to go wrong. You are going to get arthritis; you’re not going to have the energy levels you had when you were 60 or 50 or 40.
Although I do think the virus and the drugs exacerbate existing conditions; I do think things accelerate and explode a bit with HIV. So I’m probably a little bit worse off than a healthy 75-year-old. But you must be careful not to blame everything on HIV.
The cocktails have done wonders, there’s no doubt about it. Although some have been very toxic. One drug gave me pancreatitis, another sent me quite barmy. But these days, the situation is a lot better — there’s such a wide choice of drugs.
HIV has taught me to be more empathetic and less judgemental of people. It has taught me to appreciate what I have. You get to value things you didn’t notice before — particularly good friends. It sounds corny, but I’ve learnt to live for the moment.
My advice to the young newly diagnosed would be to seek out help and support. There are places and people around that can help you through it. It’s very important to talk to others — especially of a similar age — who are in the same position.
When I was diagnosed in 1988 I was told I’d be lucky to live three months — six at the most. I couldn’t believe I made it through that first year. My attitude for many years was, “Well, look, there’s another day gone.” So I feel unbelievably blessed to be here.
People with HIV weren’t meant to live this long. Now people with HIV are being put in aged-care homes. According to the experts, I should never have made it. I think “Gee, I’m still here — I’m 75!”