“In the doctor’s mind, I was a heterosexual woman, married with children. I didn’t fit the profile.”
– Dianne, diagnosed with HIV in 2010
Committed to her community services work and maintaining family life, Dianne’s diagnosis came late in her journey. She had been chronically ill for approximately eight months and, after having a grand mal seizure, was taken to hospital experiencing memory loss.
Doctors did a brain scan and diagnosed her with five brain tumours and secondary brain cancer. Within four days, she was operated on to remove what they could; however, what they found in that operation was a significantly compromised immune system and toxoplasmosis on the brain.
“I remember being in Recovery and the medical team started asking questions about previous illnesses I’d experienced,” Dianne explains.
“By this point, I was six months into some of the most horrible illnesses – fungal infections so bad I was losing toenails and a debilitating cough, which I eventually understood to be pneumocystis phenomena (PCP).”
Dianne had been doing her best to self-manage these illnesses: going to her GP as needed, taking sick leave and persevering, hoping to get on top of them.
“While I was in hospital, I started to understand that the doctors were recognising each of these conditions as AIDS-defining illnesses,” she recalls.
A test and treatment offered Dianne a lifeline.
A few days later, while still recovering from surgery in the Neurology Ward, she was visited by a specialist and a social worker.
She says: “They were clearly anxious about the news they brought, and simply said, ‘You know the test you signed for?’, and I acknowledged I did, and they nodded affirmatively. I took a big breath in and breathed out a sigh of relief and said, ‘Thank god for that!’”
Medical staff were shocked by Dianne’s reaction, but to her, a diagnosis of HIV and AIDS was a treatable condition.
“All I could think was you have just given me a life sentence, when I’ve been living the last week with a death sentence,” she explains.
As a mum of four, Dianne’s disclosure and recovery came with many layers.
Treatment started immediately, with Dianne continuing in hospital for the next few months to get on top of her late diagnosis.
She chose to tell each of her children and had to manage not only their emotions, but who they might speak with about it, and her youngest had to be tested himself.
Stigma, even in 2010, was very real. Medical staff encouraged against sharing her diagnosis, but Dianne – knowing her health depended on living her truth and doing all that she could to build her immune system back up, which included taking antiretroviral treatments, was honest with herself and her close circle.
“My partner, who I had been with for years since separating from my ex-husband, was my rock. Without his love and support, I’m not sure I would have coped,” she says.
Nine years on from Dianne’s HIV diagnosis and many challenges later (she survived a rapidly advancing breast cancer in 2018), she manages her life and health a little differently to the earlier years.
“I’ve changed how and what I eat, and I know that I can only work two days a week to keep myself optimal at all times. Earlier on, I used that time as the National Chair for Women with HIV, and in speaking opportunities with the Health Minister and for Pozhet. More recently, I give that time to working in an HIV outreach team and speaking publicly about being a woman with HIV,” Dianne says.
“I think when you get that diagnosis, you go into a state of grief and shock. You must be gentle on yourself – give yourself time and space to accept it, find your place and move forward. For me, that took a couple of years. There is no right or wrong time.”