The 1st of October was ‘Older Persons Day’ and as a person aged 59 and living with HIV I thought this would be an appropriate time to speak up for the generation that are growing older and dealing long-term with this condition.
One in four people receiving HIV treatment in the UK are aged over 50, that’s 25,000 people and that figure is set to double in the next five years. I want to give a different perspective to that of those who are recently diagnosed – the other end of the rainbow if you like.
I have been living with HIV for 21 years, I was diagnosed back in 1993 and back then things were so different to what we see now. I was told that my life expectancy would be eight years at the most and that I should get my affairs in order, make a living will, give powers of attorney, cash in pensions and make funeral arrangements.
I made a conscious decision to not let the diagnosis and prognosis interfere too much with my life. I carried on working, and with the fantastic support of my partner I put HIV in its box and just brought it out into daylight every three months for hospital monitoring. I was convinced that having a positive mental attitude and living a healthy life, taking plenty of exercise, keeping good hygiene and eating healthily would see me through. I just got on with it and it worked – I am still here to tell the tale.
Medication back then was extremely limited, a number of my friends were not coping well with it, and many of those didn’t make it. I had some problems myself with the dreaded AZT, and since have had several drug regimen changes. I forged a close relationship with my consultant, clinic staff and my GP – they were and still are wonderful. I owe them so much for my longevity, the constant monitoring and support is fantastic – nothing is too much trouble for them.
All the concentrated effort that went into treatment research back in the 1990s, after the tombstone advert era, has paid off. I consider myself so lucky to have survived the bad times, and there is no doubt that HIV treatment research is one of the biggest success stories of the 20th and 21st centuries.
So, here I am, 21 years later and a different set of worries are starting to surface. I am told that people on treatment can live a near normal expected lifespan and that it is now a manageable chronic condition. What does normal mean for someone who has been taking meds for 21 years? What effect will that have on my body and life span? Taking any medication has consequences, but to be on them long-term is still uncharted territory. Also I am told that HIV itself can accelerate the ageing process by up to ten years due to the inflammatory effect on the body’s systems. So I might live longer but with what consequences?
I shall keep making my own life decisions, I have opted for early retirement and am now enjoying the fruits of not giving in back in the early days. Now I’m lucky enough to face the same fears as most of the ageing population. What to do in retirement, How to afford it, manage our pensions and finance, and cultivate new pastimes and hobbies.
I am living well with HIV, but I must be prepared that this might not always be the case, and that care options have to be thought about.
All things considered ageing with HIV isn’t so bad.