Lyndal’s story of long-term survival, to still be around to turn 80 recently, is a remarkable one. It is testament to her determination to deal with the virus in her own way, regardless of what doctors and the medical establishment might have advised at the time.

Twenty years with no antiretrovirals

“I didn’t take HIV antiretrovirals for twenty years,” says Lyndal. “I had friends in the medical profession telling me to be wary of some of those early HIV drugs like AZT which they said were making people sicker from taking them.”

As someone who lost much of my muscle in the arms and legs in the late 1980s from taking high doses of the then experimental AZT (Zidovudine) – and arguably from the impact of the virus which I tested positive to in 1984 — I know the truth of what Lyndal is saying. But I was surrounded by many friends who were getting ill from HIV then and I was desperate to try anything that doctors suggested to stay alive.

Lyndal, however, took a different approach which fortunately worked for her over the long term.

“I was under the care of an HIV doctor at the Mater Hospital in Brisbane who arranged for regular blood tests, but I refused to take treatments. Instead, I started taking many vitamins and supplements — selenium, odourless garlic, zinc, magnesium and iron, and many more –  to stay healthy.

“The other thing working for me was my fitness. I had been a ballet teacher and learnt how to build muscle, doing regular exercises.”

Stigma from health care workers

Shifting to Toowoomba in southern Queensland did bring its challenges. While she had experienced some HIV stigma previously from neighbours in Sydney when they found out she was positive, she was surprised by the negative reactions from some health care workers in the smaller rural health service.

“There was certainly a noticeable attitude, for whatever reason.

“My health has suffered a little the older I get which has necessitated regular visits to the local hospital. I have experienced rises in blood pressure when I stand up quickly which can lead to dizziness and a fear of fainting. I’ve had two cardiac arrests and my energy levels aren’t always great. I’m also struggling a bit with my current HIV med, which can make me feel ill, so I only take it every second day.”

Ryan’s Rule

“I guess the one thing that has helped me with hospital stays has been using ‘Ryan’s Rule’, a policy that was established in Queensland to help patients have more say when they are being asked to go home from hospital.

“My daughter has used this rule once on my behalf, which ensured a second opinion was sought and I then received additional treatment.”

To have survived for forty-three years with HIV, through a time when there were no effective treatments (and to be brave enough not to take them for twenty years) is no mean feat. It’s clear to me from our interview that it is Lyndal’s mental approach to living with the virus – along with a healthy lifestyle and maybe some favourable genetics – that has helped her considerably in her journey living with HIV.

She had minimal contact with other HIV-positive peers but has kept in contact with health professionals trained in HIV medicine where possible.

An inspiring story from a woman who didn’t have time to die because, as she said: “I had little ones to raise.” Lyndal raised two children, Rachel and Joshua, and now has six grandchildren.