Still here in our seventies

Susan Paxton

When I was a child, in the space of a few years, each of my grandparents died, all in their seventies. So, I assumed that all people lived until their seventies.  Then, over thirty years ago, I was diagnosed as HIV-positive and the expectation of my longevity was shattered.  I was a single mum with a toddler, and I was told that I would probably have five to eight years to live.

And here I am. In my seventies, still here!

After my diagnosis, I never imagined I would grow old with HIV.  I am certainly luckier than those who were diagnosed only a few years prior to me.  Before antiretrovirals (ARVs), I lost over 100 friends and colleagues.  When ARVs first became available, I was sceptical because I saw many of my gay brothers experiencing side effects of projectile vomiting and diarrhea.  And then non-nucleoside reverse-transcriptase inhibitors became part of the HIV drug cocktail.  By then, at the end of the nineties, I had 40 CD4 cells, and my viral load was over four million.  I started ARVs, and I have never looked back.  My immune system is now robust and my viral load is undetectable.

In 2000, within a few months of starting my HIV meds, I ran with the Olympic torch. This was despite being unable to run 400 metres six months prior. I completed my doctorate in public health and I began a new career as a public health consultant working in Southeast Asia and the Pacific.  I conducted training in advocacy, carried out research on HIV-related discrimination—particularly as it affected women—and helped to reform health policy in Indonesia, which had recommended abortion and/or sterilisation for HIV-positive women.

Before the Covid-19 epidemic, I retired.  I am now relishing my old age.  I went to a painting class over a decade ago, and I now spend time oil painting as well as smashing and tumbling glass and using it with resin to create art pieces on glass.  I volunteer with a women and justice organisation and I am asked to run occasional workshops for my peers.  I am joyous that I actually reached my three score and ten, and am still going strong.  I have some side effects from the earliest meds I was on—in  particular osteoporosis for which I have six-monthly injections—but on the whole, I am as well as most women of my age.  My heart has a weak left ventricle, so I become breathless easier than I used to, and that could be HIV-related, due to my genes, or heartbreak!

Susan Paxton, self portrait

Susan Paxton, self portrait

Yes, I have a few scars having lived with HIV for 35 years.  The biggest has been the loss of so many people I got to know and love.  However, having faced the possibility that my life may be curtailed, I was given a gift: I realised life is very precious, so I made decisions not to do what other people thought I should or ought to do, but only those things that I wanted or needed to do for my son or myself.

I knew I had to take ARVs, and I am so grateful for my medication, perhaps much more than healthy people who start ARVs, because I saw that they gave me a second life. Obviously, guys who were diagnosed before me and have survived with long-term ill health, have had a more challenging journey.

Stigma continues to be a significant issue for many people living with HIV, however in my experience I found that the majority of us experience self-stigma.  Yes, some people, particularly within the health industry, where we are more likely to disclose our HIV status than in other sectors, treat us differently, but they are such a tiny minority, and insignificant to our lives.  HIV-related stigma has reduced enormously since HIV was first recognised and labelled.

People diagnosed today do not need to worry that HIV will impact on your capacity to live your life as fully as you did before your diagnosis. Today, growing old with HIV, isn’t the end of anything.  Personally, I am simply grateful that I am still here.

David Menadue

One of the assets that has got me through over 40 years of living with HIV (and several AIDS-defining illnesses) has been my optimistic view of life. This has relied on numerous things: supportive family and friends who didn’t turn their back on me once they found out my diagnosis; a strong group of HIV-positive peers who shared the highs and lows of my journey; and good, empathetic doctors.

It’s been challenging to balance this with the negatives: the fears about your mortality and the loss of so many good friends along the way. No one really knew the answer to survival in the early days. While many of us ate a good diet and exercised regularly, some of the physically strongest among us were struck down by the virus, sometimes in a matter of months.

So, it was about surviving until decent HIV antiretrovirals came along in 1996. Protease Inhibitors at first, followed by the NNRTIs and the Integrases have saved the lives of us long-term survivors. But as the first generation to have aged with this difficult virus, we are now in tricky territory.

David Menadue

Many long-term survivors are experiencing age-related conditions ten to fifteen years sooner than the average person. This is due in part to the lack of treatments early, but also on the underlying inflammation we know the virus is capable of.

My own experience suggests that this is what is happening to me. Many different parts of my body show signs of wear and tear. As I write this, I am struggling to type because of osteoarthritis in my wrists.  Some days, walking is a challenge because of the same problem in both my knees. I have five different specialists: heart, gastro, diabetes, renal, and of course infectious disease. It’s clear I live a very medicalised existence.

I was charged with writing this to provide some wisdom and encouragement to younger HIV-positive readers as they face their elder years. I fear I may not have done the greatest job. But most of you will not have had the same exposure to the virus as I and hopefully will have started your treatments after the mid-90s. If so, you have a good chance at longevity and quality of life.

You need to monitor your health with regular blood tests and at least six-monthly HIV-specialist doctor visits.  Read up on the medications you are prescribed, develop a good relationship with your pharmacist, prepare for some side-effects (weight gain might be one of these), and keep as fit and active as you can.

Get the help of a counsellor to deal with your mental health. And mix with other HIV-positive people. For me, this is the most valuable thing I have learnt about dealing with the stigma of HIV.

As much as you can, think positive about being HIV-positive.

 

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