Beryl
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.
Beryl’s in her 50s and lives with a degenerative disc disease, cervical spinal stenosis, anxiety, depression and trauma.
Several years ago, Beryl’s doctor diagnosed her with functional neurological disorder (FND), a chronic condition involving weakness, tremors and pain. Some doctors are sceptical of the symptoms because of the difficulty pinpointing the cause of FND.
‘I was having chronic backache at the time of the diagnosis, but no substantive investigation took place into this,’ Beryl told the Royal Commission. ‘I feel that because of the FND diagnosis, I don’t deserve anything. I feel devalued and not treated well. All my physical symptoms seem to be dismissed.’
Beryl said that since the FND diagnosis, she’s had trouble getting doctors to treat her other medical issues.
‘This label has blocked me from receiving proper care. If the label was not mentioned, then I feel I could explain my symptoms and the doctor could assess me properly on those rather than just going by the label.’
Beryl said when she had trouble with her speech, the doctor ‘pointed to the side of her temple and said, “We are here to talk about this and not this,” pointing to [Beryl’s] mouth’.
Beryl has osteoarthritis, but ‘because they link it to FND’ doctors refused to treat her pain.
‘Although there is a clear physical evidence of stenosis and degeneration … all this gets ignored … “It has to be from FND,” [they say]. It cannot be from advanced degenerative disc and decompression needing surgery, even though I have that in writing.’
Beryl said she has applied for NDIS support several times, without success.
‘I am finding that my health is deteriorating. … I don’t get any home help. I don’t get any health management. I am desperate to move forward with my life, but I find I am having to battle constantly.’
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.