Nicoline
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.
‘It really affected my daily life. I felt like I was in a form of pain all the time. And it made me very depressed, and I just wanted to end things.’
Nicoline was diagnosed with paranoid schizophrenia a few years ago and admitted to a psychiatric ward.
‘I was in hospital for about a year. And then they let me out into the community,’ she told the Royal Commission.
On her release, Nicoline was placed under an involuntary treatment order.
‘Which means they controlled whether I had medication or not. And the medication that I got … had some pretty negative side effects. And every time I tried to talk to the doctors about it they wouldn’t even respond. They’d just um and ah and then not tell me what was going on. And they left me on this medication … I really struggled for these three and a half years.’
Nicoline started having suicidal thoughts and uncontrollable restlessness, but doctors still ignored her.
‘I would have liked to have tried other medications because these side effects are only apparent in the atypical antipsychotics, and they’re pretty bad. Your suicidal risk goes way up and they can have more permanent disabling effects if you’re left on it for too long.’
Her caseworkers tried to help.
‘They all knew something was quite wrong … They did what they could. They’re not doctors. They even asked for a reduction, like the amount of time between injections.’
Nicoline’s mental health team eventually took her off one drug, but not the monthly depot injections.
‘It didn’t take away the shaking, like my involuntary movements or you know, the irritability.’
Nicoline ‘tried to find out what was going on’ on the internet.
‘But it didn’t even have anything close to what was going on with me.’
She finally learned the truth when she ended up in a correctional centre.
‘I was able to refuse my medication after being taken off the involuntary treatment order.’
A prison psychiatrist was worried about the symptoms Nicoline described to her and gave her information on the possible fallout of her medication.
‘On the list were Parkinson’s disease and (one of its symptoms), akathisia. She’s put a note for me never to be placed on that medication again.’
Nicoline feels she has akathisia disorder as a result of medical neglect.
Most of the side effects have gone, though Nicoline still has trouble standing and sitting.
‘Even sitting for five minutes it’s painful. I just don’t feel like I’ve got the muscle strength.’
But she feels like she’s in a much better head space.
‘I’m not on any medication at the moment … I’ve gotten much more confident. I’m focusing on educating myself while I’m in prison. I’d like to make sure that when I get out, I don’t have a hospitalisation again. Because I’m not really sure if the effects are going to come back.’
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.