David talks here in his own words about his life with HIV, as he approaches 50. He sets out some of his concerns, hopes and questions.
This story is only one of many that has been shared with us and it does not represent the experiences of all people living with HIV. If you have a different story, we'd like to hear it - please do get in touch.
"Looking back now, to half a lifetime ago, it's hard to recognise the life my 20-something self lived: a clear career path, financial security, and a social life that exhausts me to even think about it today. That was the early 1990s, so when the news of my HIV diagnosis was delivered it came hand-in-hand with a long-term sick note ("chronic viral illness" cloaked the acronym we all dreaded and meant I was effectively leaving work for good), the phrase "make the next 6 months count", and the advice to start applying for disability and incapacity benefits. This was a whole new world, a whole new mindset, as alien as every other aspect of the situation I had suddenly found myself in. For most young people middle-age, let alone retirement, seems irrelevantly distant; for me, post-diagnosis, the possibility of either had been erased. Growing old was not something I was ever going to have to face.
"Then combination therapy arrived. Fast forward a quarter of a century and now I find myself with the big 5-0 only a matter of months away, and middle-age and, eventually, old-age, are not only back on the agenda but somewhat closer than I expected. Strangely, however, both still seem rather unknowable: even as I head towards it, ageing still feels like something that happens only superficially in my mirror, or to other people. Perhaps that is partly to do with the fact that I necessarily remain too preoccupied with the demands of daily or weekly concerns to really consider what might be waiting for me in the years to come. Yet if I must start to address the challenges of ageing I must also accept that I face them as a person living with HIV. So what exactly does that mean, and what does that future look like, to me, right now?
What will the future really look like for me?
"I have read bits and pieces about an increased likelihood of this or that ailment, and of age-related illnesses appearing earlier in life, for HIV+ people but have no clear idea of what this means for me or what I can do to reduce the likelihood of these things, other than to accept them as an unfortunate side effect of the medication that is keeping me alive. How do I balance the combination of factors, physical and psychological, that are attributable to the legacy health issues from the early days of HIV prior to effective medication, my health issues from long-term HIV and medication, and the usual health issues that come with ageing? Will they compound each other? Will they be manageable? How do we anticipate, let alone prevent or cure, them? Where do I find this information? Does it even exist? I do not know. As I consider this it alarms me: there are clearly more unknown battles ahead.
The toll of worry about financial stability
"The welfare benefits that were originally awarded 'for life' are now slowly being depleted or removed by harsh and unrealistic assessments, compounded by a growing desire in the media, often met with complicit silence from elsewhere, to portray those reliant on welfare payments as liars and scroungers. The toll of the worry, uncertainty and indignity of the process, let alone repeated reassessments or being forced into work just to make the statistics look good, must not be underestimated. How can this ever enable any of us to concentrate on living healthier, more independent lives let alone even begin to hope to contribute meaningfully back into the society? Financial security, for essential needs, is, for me, the biggest and most frequent concern I have about the future and it far outstrips my concerns for my own health.
"When I was finally retired from work on grounds of ill health, the pension I had, up to then, seen only as an inconvenient deduction from my pay slip, now came into its own. Many HIV+ people in the same situation took their pension as a lump sum and spent it because, let's face it, we only had 6 months in which to do so and the time to make the most of it was right there and then! As a result, for many long term HIV+ people, a state pension appears to be all that awaits to keep them warm and fed when the time comes. The health implications of this are clearly concerning. And an awareness of this moves my focus forward, say another 25 years. What do I imagine is waiting for me there?
My future is a gift, but one full of worry
"Without a family of my own I wonder if my own support network, most likely made up purely of friends, will be sufficiently resilient to cope? As an inability to work means I will never own my own home, will I be involuntarily filtered into the care home system? What issues will I face as I require support outside of the HIV-specific services that I know and trust? Will medical staff who provide generic age-related care be prepared, let alone able, to supply effective and empathetic services to someone who co-presents with HIV? All these questions! This future that I had never imagined being possible, and which still seems an almost unimaginable gift, now feels increasingly full of uncertainty, of worries, of problems yet to be addressed.
"Part of me wants to hole up again in the short term preoccupations with which I usually occupy myself, but another part of me wants to react, to highlight these issues, for myself, for others, to ensure they are on the agenda and being dealt with, now. Because now is the time to be asking these questions, directing them at people who can make a difference, to voicing these concerns and working with policy organisations and service suppliers to ensure that practises and standards of care are put in place countrywide so that those with HIV in urban centres and those living in remote rural areas can expect, and receive, effective levels of care regardless of their postcode, and be confident that this is the case before these services are required.
I want to be at the heart of any decision that affects me
"As with all of my treatment, support and care, I want to be consulted about this, and every, aspect of service provision; I want to be at the heart of any decision that will affect my life, not expected to be passive and patient. Already that old fire that had me, back in my 20s, marching noisily against the problems we faced in the early days of HIV, is starting to rekindle. It seems that the moment we stop pushing, cease being key to directing services, not present on boards and working committees, or get complacent in our accepting silence, then things no longer get done as effectively as they might. The fact that this uncertainty shrouds my perception of ageing with HIV highlights problems we must all face.
Ageing with HIV needs to be on everyone's agenda
"I want to age defiantly, to grow old with a life as full and rewarding as possible, supported in a way that will not burden me with further stigma, discrimination or inadequate services. To achieve this we all need to stop and imagine what we see as our own future as HIV+ people, or indeed as service providers, and realise that each of the questions to which we have no suitable answers needs to be asked, loudly and clearly, right now.
"In looking to the future, for the first time in decades, one thing to me is clear: ageing with HIV needs to be on everyone's agenda. It's the next big challenge, for all of us."
HIV Scotland is collecting the experiences and stories - like this one - of people living with, affected by or potentially at risk of HIV from across Scotland, to inform our work and to raise awareness about the reality of life with HIV.
We take confidentiality seriously and do not share any information without express permission from the individuals we talk to.
If you would like to share your story, or if you have questions about living with HIV, please do contact us.