Ageing with HIV: my hopes and fears

Michael is a 54 year old man with HIV in Scotland. Here he talks in his own words about how he feels about growing older with HIV - his experiences, hopes and fears. He prepared this piece originally as a speech at the annual meeting of the Scottish HIV and AIDS Group (SHIVAG).
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 - particularly in relation to some issues such as confidentiality. If you have a different story, we'd like to hear it - please do get in touch.

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"I've been living with HIV for 19 years"

"My name is Michael Aries. I am 54 years old and live with HIV. Earlier this year I reached the 19th anniversary of my diagnosis, the 23rd of June 1996. I wasn’t in a high risk group so the news I received that day was a complete and utter shock.

"At the time I was 35 years old and didn’t think I’d see 40, I’d seen all the news reports and heard the horror stories about ‘AIDS’ so gave up on life and expected a slow painful death.

"I’d been a regular blood donor ten years earlier before I moved to London, now that I was back in Glasgow I decided it was time to start doing my civic duty again. My timing was perfect, routine screening of donor blood had just been introduced. Without it I would never have found out about my own condition and may well have unknowingly infected someone else.

"I was lucky when it came to treatment, I was diagnosed just as triple therapy became common practice. If it wasn’t for those two factors I would not be standing here today. The fact that I am is a testament to the countless medical professionals who have worked tirelessly to find the most manageable, effective and least disruptive treatment to give me and also the fact that my heart refuses to stop beating. I can’t thank the medical profession enough for the work they do on my behalf.

"I'm living proof that there's a future for people with HIV"

"Until the introduction of combination therapy HIV was seen as a death sentence so focus was on public awareness and the stark warnings about the danger to society that HIV posed. No one from the 80’s can forget the apocalyptic public information films. At that time it was inconceivable that anyone could have a future living with HIV.

"Now there is a future, I’m living proof of that. I’m 19 years diagnosed with 9 of them undetectable. I have a life, I run my own business and do voluntary work for charities. I’m also a committee member for the positive people’s forum which is organised annually by and is exclusively for people living with HIV, giving them a voice and opportunity to highlight their experiences living with HIV and to directly contribute to HIV’s policy landscape. At the last two forum’s ageing has been identified as a major concern for people living in Scotland.

"I am concerned about what old age will bring"

"None of us have a crystal ball so we can’t see what ailments lie in front for us but we will all contract something attributed to old age. The common complaints are well serviced of course but not with HIV in mind. Stigma in care homes, people making assumptions and the unknown effects of long term use of medication are all concerns of those living and ageing with HIV.

"I don’t worry about dying in hospital prematurely any more - but I am concerned about old age and the problems that it will bring and how those problems will affect my ongoing condition. HIV is an unknown quantity. New drugs are being developed every year increasing life expectancy, but also the questions about how the body will react to long term exposure to treatment. If I live to 70 I’ll have been on toxic anti-retroviral drugs for half my life - nobody knows the consequences of that.

"Questioning doctors about drug interactions shouldn't be my responsibility"

"Last November I fell ill, it felt like the flu at first and persisted for a couple of weeks before I saw a doctor. I was taken to hospital and told my kidneys were out of kilter which was caused by a rogue virus that was going around at the time. After a couple of days on fluids and antibiotics I was back to normal and sent home. Three days later I had a heart attack while walking along the road. Again I was taken to hospital and given the necessary primary care. A blood clot was identified and treated.

"During my first night in hospital the doctor wanted to give me heart medication, I told him I couldn’t take anything until he spoke to my consultant or the pharmacist at the Brownlee Centre. The next morning the nurse who was looking after me came over and said ‘fair play to you Michael for standing up the doctor, one of the drugs he wanted to give you interacts with your HIV meds’. It turned out it was the other way round, one of my HIV meds interacted with the heart drug he wanted to give me, boosting its properties, so the dosage had to be reduced in order for me to be given it.

"If my heart attack had left me unconscious or unable to communicate I wouldn’t have been able to question the doctor and might not have survived. As my case demonstrates, treatment that is administered to non HIV patients can’t always be given to an HIV patient in the same way. Drug interaction can result in the wrong dosage being administered with potentially fatal results.

"I was lucky that I had the good sense to question the doctor and get the medication checked out first but that shouldn’t be the responsibility of a patient, and I don’t always get it right.

"Doctors who aren't HIV specialists have little or no knowledge of it"

"In 2009 I had cancer. It has a long technical name so I’ll just call it arse cancer. I thought I had piles so went to my GP to get some cream. I was seen by a locum and explained to him that I was HIV positive and had looked up my symptoms online, he admitted he didn’t know much about HIV and examined the problem area and agreed with my synopsis. A few weeks later I was back at the doctors for a new prescription and saw another locum, the same scenario applied, on my third appointment I saw my regular GP who knew me and my history.

"As soon as I explained the problem he referred me to a specialist who immediately booked me in for surgery and operated, it was a kind of cancer that HIV patients are susceptible to and less common elsewhere.
It’s a real concern to me that medical professionals, outside the specific field, have little or no knowledge of HIV and are inclined to either trust a patient to know their condition or simply treat the immediate concern without taking account of HIV.

"The likelihood of misdiagnosis or mistreatment increases"

"Through time as patients grow older and more common complaints arise, the likelihood of misdiagnosis or treatment will occur with patients being put at risk, not from HIV or the ailment being treated, but the treatment itself and its interaction with HIV medication. If doctors are inclined to misunderstand HIV what chance do the people further down the chain have? Nurses, home help or care home staff all of whom have the responsibility to look after someone’s welfare as they get older including their medication. If I develop Altzeimer’s or Parkinson’s disease how will my treatment for that affect my treatment for HIV? All care professionals should be educated about HIV and the potential risks when an HIV patient is presented to them.

"I look after myself, as long as I’m able to do that I’ll be fine but if I have to rely on others to look after me, how confident can I be to have the life expectancy that HIV treatment now offers.

"HIV will always be part of my life but nowadays I see it like a 24 hour clock that’s stopped. Once a day that clock will tell the right time just like once a day I have to take my medication. For the rest of the day I can forget about HIV just like that broken clock and get on with my life like everyone else around me."

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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.