Di
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Di is in her 40s, is hard of hearing and has partial paraplegia. She lives with mental illness and has been prone to dislocated joints, broken bones and infections since she was a child.
‘I was extremely clumsy all my life and would break bones with not much effort. I couldn’t participate in sport or ride a bike,’ Di told the Royal Commission. ‘I was unwell with a lower immune system [and] multiple ear infections.’
In her 20s, Di began to self-harm and was admitted to a mental health clinic where doctors diagnosed borderline personality disorder. They told her that she ‘would need a high level of care for the rest of [her] life’.
‘I had people telling me that I needed care, and that actually caused it to continue. Instead of what should have happened, which was them to say, “Okay, you have a few issues, let’s sort them out and get you back to your career”.’
Di said that, despite several years of treatment, she didn’t get better. So she left the clinic and stopped her medication.
Several years ago Di developed a complex series of symptoms including vomiting, heartburn, chest pain, anaphylaxis and unexplained seizures.
‘All the medical specialist doctors said to me when I started to get physically unwell that, listen, you’re never going back to work, you’ve got a psychosomatic condition called FND or functional neurological disorder. Which I’d like to point out, a lot of medical people and myself believe there is no such disease.’
One night several years ago, Di rolled over in bed, ‘heard a horrific crack’ and felt intense pain.
An ambulance took Di to hospital. There, a doctor told the ambulance officers to leave her in the corridor because she ‘had a past history of “psych” issues [and] was probably faking it’.
‘No-one believed that I’d moved over [and] severed all the nerves.’
Di was later told she’d injured her coccyx, causing nerve damage and requiring a catheter. The catheter has been the source of several infections.
A couple of years later, a specialist treating one of those infections told Di she might have Ehlers-Danlos syndrome, which makes her prone to joint dislocation and infections.
Another doctor referred Di for genetic testing and she was diagnosed with a rare type of Ehlers-Danlos syndrome that includes osteogenesis imperfecta, also known as brittle bone disease.
Di said doctors had for years minimised her physical symptoms because of mental illness.
‘The most important thing is that people with mental illness can get sick too [and not be] heard simply because [they have a mental illness].’
Di told the Royal Commission that during a procedure to change her catheter, she contracted an antibiotic-resistant infection at hospital.
‘This has ultimately cut my life shorter than it should have been as … this infection is untreatable [and] my care is now palliative.’
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.