Gene
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Gene is in her 30s and has postural orthostatic tachycardia syndrome, post-traumatic stress disorder (PTSD) and depression.
‘I’m very isolated because, not only do I have my own chronic illness and disability, I also care full-time for my mum, who has a disability,’ Gene told the Royal Commission. ‘I can’t socialise or work properly and I definitely just feel like a massive burden to everybody around me.’
Gene struggles to get doctors to believe she has a gastrointestinal illness.
‘When I presented with the more severe gastric issues, they of course said, “You’re young and female, you definitely have an eating disorder,” when I had none of the signs of it … Even with testing that proves objectively what’s going on, I’m still called a faker and a liar.’
Once when Gene was admitted to hospital malnourished because she couldn’t digest anything, a nurse tried to force-feed her.
‘[They] forced me to eat every bite of a tray that was more than I would ever be able to eat in my life … It was just more than I could handle and I got super unwell.’
Gene said another time when she couldn’t eat or drink, a doctor removed her intravenous drip and she spent ‘about 10 days with no fluids, no food, absolutely nothing’.
‘I was having multiple falls. It was really dangerous and I just got yelled at and told, like, “Well, it’s your own fault and if you’re not going to do this then you get nothing.”’
Gene said her hospital experiences gave her PTSD and depression.
‘The problem is often physical health leads to a mental health crisis, you then can’t get help for either because no-one knows where to put you … and your mental health is used against you, especially with digestive issues because, like, if you have anxiety you can often get some digestive issues so they always want to pass everything off as mental health.’
Gene said gastroenterologists at her local hospitals now refuse to treat her.
‘You know, I’m a “crazy hysterical female”. And what happens is that because they don’t believe me and because that’s all written down in my [discharge] notes, that then gets passed on to other hospitals.’
Gene flew to another city to see a specialist, who recently diagnosed her with a motility disorder that disrupts her digestion.
‘I actually had to travel [to another city] just to go and see a doctor, which is crazy. But he was really, really good … Everything just ran a lot better and I got a lot better care and I felt safer.’
Gene said many doctors have little understanding of the link between physical and mental health.
‘If you live with a chronic illness and you live with a disability, then you’re isolated and you can’t get the help that you need and you’re in pain and unwell 24/7. There’s no way that can’t affect your mental health. A hundred per cent it will. But then … getting the help for that mental health is really difficult.’
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.