Stephanie
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‘There’s no education on this condition and they seriously believe it does not exist. There’s a lot of stigma, mistreatments and neglect.’
Stephanie is in her late 20s and lives with complex post-traumatic stress disorder (C-PTSD) and Ehlers-Danlos syndrome (EDS).
‘It’s a connective tissue disorder, and I’m having quite severe symptoms associated with that,’ Stephanie told the Royal Commission. She has been fighting for two years since her diagnosis ‘for any type of adequate treatment’.
She said that when her symptoms first started appearing around 2015, doctors didn’t take her seriously because they have ‘miniscule’ knowledge of the illness. She was having ‘blackout episodes’, headaches and memory loss, yet most GPs put it down to her mental health.
‘For the first three years it was – oh it’s period pain or you’re fine, go home, you’re just hysterical, it’s in your head, you know. I just think it’s all too easy for them to blame psychosomatic disorders, especially when somebody has something like C-PTSD.’
Stephanie tried ‘about 140 places’ last year to get a new GP for necessary referrals. Most told her she was ‘too severe’, or that she had to come in for an appointment first.
‘And I’m like, “I can’t stand up to go to the toilet let alone come to see you.” I can’t leave my bed. I can’t get out. I can’t even be moved to a new place because moving me will exacerbate my symptoms and, without medical interventions, I might not survive it this time.’
Stephanie feels she has been ‘roadblocked’.
‘It is quite terrifying. This is not how I want to live, especially when there’s a lot of treatments and a lot of interventions that I should be getting. In every other country there are treatments for this condition. Just not in Australia. I’ve just been left in the lurch.’
Even her current specialists have ‘no idea what they’re talking about when it comes to EDS’. She believes they should ‘figure it out’ and help her.
Left untreated, Stephanie’s condition has worsened. She can’t move her head and wears a neck brace for support.
‘At the moment, I’m bed-bound … I’ve just completely fallen apart. I have 24-hour nursing services.’
During hospital visits, staff have ‘dropped’ her on to a bed and refused to allow her support workers to assist.
‘The last hospital admission was quite horrific, I don’t think I’ve ever been treated like that before. There was neglect and emotional abuse.’
One nurse told Stefanie that she was ‘incompatible with life’ and refused to treat her.
Stephanie was trying to avoid surgery at all costs.
‘But now I’ve now been told by doctors that actually understand this condition that they need to treat this as if it’s a traumatic car accident. They need to respond with the urgency and the care that would be required of that.’
Stephanie is on a waiting list to see a specialist about emergency surgery.
‘It wouldn’t have gotten to this stage. I could have prevented it if we’d done interventions years ago that would’ve stopped this progression of my disease.’
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.