Nylah
Content Warning: These stories are about violence, abuse, neglect and exploitation and may include references to suicide or self-harming behaviours. They may contain graphic descriptions and strong language and may be distressing. Some narratives may be about First Nations people who have passed away. If you need support, please see Contact & support.
Nylah is in her late 60s. She has post-traumatic stress disorder, anxiety, a physical impairment relating to her spine and a rare and complex heart condition.
About 10 years ago, Nylah began to develop significant pain and sought treatment from a local GP. The GP largely ignored Nylah’s reports of heightened pain. Nylah got ‘sicker and sicker’ but the GP just blamed this on her anxiety. She said Nylah should see a psychiatrist because she was ‘imagining it’, but continued to treat Nylah.
Nylah told the Royal Commission it wasn’t until later that she found out this GP had determined that she had Munchausen syndrome – a rare type of mental disorder in which a person fakes illness.
‘For six years I thought I was being looked after by my doctor … I had no idea that a lot of information wasn’t being passed on and that she was telling everybody I made things up.’
Nylah believes this was one factor that would influence future interactions with medical professionals.
Nylah’s heart condition had been diagnosed five years earlier – a genetic heart condition that is extremely complex. Nylah said even general cardiologists don’t understand her condition as it is very rare.
‘It’s very hard to get normal cardiologists to believe you. I’ve been laughed at and told it was the anxiety. My heart condition has been downplayed when I am having severe symptoms of it.’
Some of those symptoms included blackouts and collapses.
‘I ended up having a complete collapse, and when I finally got to the hospital the cardiologists there found I had severe obstruction to blood leaving the heart.’
Nylah had emergency surgery the next morning.
After the surgery, however, Nylah’s health continued to decline.
‘So I got sacked by my second cardiologist who after that first surgery didn’t know what was wrong with me,’ Nylah said. ‘And because I continued to black out and my symptoms get worse, after that I’m sent to a psychiatrist.’
The only people who would listen to Nylah were some ‘really good nurses who showed me some of what was printed because they could see how sick I was in my hospital circumstances’.
This was how Nylah found out her GP was telling other medical professionals she had Munchausen syndrome.
Nylah then went to great effort and risk to get herself to specialists in two states. Each time she went to a new specialist the first thing they asked was ‘did she have anxiety?’ and ‘why didn’t she trust her doctors?’
Meanwhile, for three years Nylah had been coughing up blood, yet no one ever thought it necessary to take a sample or run any tests. Other physical problems were ignored.
‘I was being treated like a piece of dirt quite frankly … I would go to the ER and I’d be ignored and sent home and treated as a joke with them saying we can find nothing life-threatening wrong with you. Nobody was taking me seriously and yet the disease I had is progressive, it is incurable.’
Nylah eventually insisted certain tests be run and finally a test was done that showed there was still an obstruction in Nylah’s heart.
Another surgery took place.
After the surgery Nylah was okay for a few months but then started to get sick again, with pain, nausea and depleted energy.
But Nylah is too scared to go to any more doctors.
‘I just got abused and bullied and completely brutalised. I’ve just been laughed at … I felt like a bug that somebody had just squashed underfoot.’
Disclaimer: This is the story of a person who shared their personal experience with the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability through a submission or private session. The names in this story are pseudonyms. The person who shared this experience was not a witness and their account is not evidence. They did not take an oath or affirmation before providing the story. Nothing in this story constitutes a finding of the Royal Commission. Any views expressed are those of the person who shared their experience, not of the Royal Commission.