Everleigh
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Everleigh is in her 40s. When she was in her teens, a neurologist told her she had epilepsy and prescribed medication.
‘I have been having seizures since I was five,’ Everleigh told the Royal Commission. ‘[The medication] basically caused me major depression. Cry all night, sleep all day depression … I was just drugged out of my head.’
Everleigh lived in the country and the diagnosis meant she couldn’t get a driver’s licence.
‘Being a country kid without a driver's licence is just considered absolutely abnormal.’
She couldn’t get a job in her town because ‘they wanted you to have a licence’. At one unsuccessful job interview, the interviewer noted her epilepsy.
‘I couldn't … be classified as disabled enough to be on the disabled pension. So, I was doing work for the dole.’
Everleigh enrolled in university, but the medication made it hard to study and didn’t stop the seizures. After she developed anxiety and depression, a psychiatrist referred her to a specialist for a second opinion.
‘[He] took one look at my medical history and said, “Who the hell told you you had epilepsy?” … He diagnosed that it's neurocardiogenic syncope, or vasovagal syncope. So, it's heart related. You know, stress, too much adrenaline, heart stops.’
Everleigh told the family doctor who years earlier had referred her to the neurologist who misdiagnosed epilepsy.
‘[He said], “Oh, yes, I thought it was something like that.” … I said, “Why, if you knew that was the case, why didn't you say something earlier?” And he said, “Oh, the neurologist/specialist had told me that, and I don't argue with them.”’
Eveleigh said she’d been medicated for epilepsy unnecessarily for seven years.
‘And I'm now wondering how many patients [the neurologist] … was calling epileptic, and I'm wondering whether they were.’
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.