Hospitalised with AIDS, I was pro assisted dying – I’ve done a 180

In September 2005, I was a patient at St. Bartholomew’s hospital in East London being treated for AIDS-associated illnesses. 

There seemed to be no light at the end of the tunnel as I approached one full month on a ward. 

My immune system was decimated and every day brought new challenges as a result of life-threatening infections like meningitis and pneumonia.

Before this, I was a young person in my early 20s with a happy disposition who didn’t think about my own mortality. 

Then, I began to experience unabated seizures in hospital, where I lost all control of my body and mind. 

In one instance I suffered a cardiac arrest and had to be resuscitated. 

Eventually I was able to think clearly for a short time because I wasn’t violently convulsing or unconscious or in a diazepam daze. 

I wasn’t given an explicit prognosis by doctors at this time, but, to be completely frank, I would have welcomed death as an escape from the suffering and prospect of it continuing. 

I thought this was my life, and I knew I didn’t want it to be. The hope was ebbing away.

As the debate around assisted dying comes to a head with a vote in Parliament this week, I’ve been reflecting on this lowest point in my life. 

Because while I didn’t say it, or even coherently think it at the time, I was firmly in favour of assisted dying – for me, or anyone else that might want it. 

I didn’t want to live my life in a constant state of anxiety and arbitrary paralysis. 

I wouldn’t have actually been eligible under the proposed law, as the option would only be available to people given less than six months to live.

But now that I’m living a wonderful life, I’m glad that the way out I considered during my darkest days wasn’t around then, and have become convinced it shouldn’t be now. 

I wasn’t always of this mindset. Until recently, I was steadfastly in favour of assisted dying. To the point that I think I was blinkered because I didn’t engage with or wish to entertain any opposing arguments. 

I just knew that before I was admitted to hospital, I’d been in pain for several months. I experienced rapid weight loss, exhaustion all the time, high fever and night sweats, muscular pains and rashes and lesions across my body.

Eventually I was admitted to the Royal London, and spent four months there, St Bart’s, and Mildmay (which specialises in HIV and AIDS associated conditions) where I was treated for AIDS dementia and brain-impairment. 

When I was in the midst of severe psychosis, which was a result of brain swelling caused by hyponatremia and an adverse reaction to the first HIV medication I was put on, I was bed-bound, hallucinating and vomiting constantly. 

For me, it wasn’t an existence. Thankfully it was only temporary, though at the time I didn’t think it would be. 

When I was stabilised on a combination of HIV antiretrovirals that were tolerable and I was responding well to rehabilitation in Mildmay, still at the age of just 25, I took it upon myself to write a temporary will and my wishes should I die. 

Requirements included Irish music at my funeral, and Steps songs (I was a HUGE fan), as well as everyone wearing bright colours. 

Confronting my mortality so young, and the fact the years following hospitality were so tough, are perhaps part of the reason why I remained adamantly in favour of assisted dying. 

For more than a decade, I suffered from bouts of deep depression. 

I was trying to get my head around what had happened as well as dealing with HIV stigma. 

It took a number of years to begin recovering from the mental effects of AIDS, and I sometimes think because of the colossal effect it had on me, I’ll never fully recover, which I’m at peace with now. 

But one thing that has changed, mainly over the last year or so, is my mindset with regard to assisted dying. 

My new views are shaped by where I’ve come from and the fact that I now live a full life spending precious time with loved ones. I am now no longer in favour of the controversial legislation, which could see people agree to end their lives when confronted with a devastating terminal illness. 

And that’s mainly because more needs to be done to offer accessible and meaningful mental health support to people in their darkest moments before assisted dying is ever offered as an option. 

I’m worried that many will turn to assisted dying, rather than seeking or receiving support for their emotional wellbeing. 

Even though I didn’t think there would be, there was also a medical treatment for me. I fear for people who lose hope when actually, there might be a new trial just around the corner. 

If assisted dying is to be introduced, it’s vitally important that the most stringent safeguarding is in place to protect the person and their loved ones. 

Right now, I am not in favour, and suspicious of any political movement that wishes to fast-track legislation like this, as seems the case right now. 

However, I strongly believe in individual liberty, so never say never. I wouldn’t want anyone else to live a life of powerlessness, if they explicitly didn’t want to. 

This is just where I am right now in my life. 

2025 will mark 20 years since I came face to face with my own mortality. I am now happy and grateful to be alive thanks to advances in medicine. 

Living a meaningful life, I cherish every single precious moment spent with people I love. 

I strive to make a difference, to break down HIV stigma, empower and educate others by sharing my story of being an AIDS survivor, and to be a voice for those who need one. 

I’m able to make a difference because I’m alive, even though at times, I didn’t think I wanted to be. 

Assisted dying wasn’t an option then. But I don’t want it to be an option now.

Do you have a story you’d like to share? Get in touch by emailing jess.austin@metro.co.uk. 

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