Andi
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.
‘If someone could have just been on my side. Instead of trying to prove me wrong all the time, trying to prove me right.’
Andi, late 40s, has multiple sclerosis (MS). She is also needle-phobic.
‘I still drive. I still live alone. I'm looking after myself.’
Andi told the Royal Commission people are a ‘little bit discriminatory because [they don't] really understand MS and [don’t] really understand how [she] experiences MS’.
For Andi, MS affects her mobility and makes her extremely intolerant to heat.
Some years ago, while driving, she was struggling with the heat and began experiencing severe pain. She pulled over and because she didn’t have a friend to call, rang an ambulance to take her to hospital.
At the hospital, doctors wanted to take some blood to find out what was going on. Andi refused, explaining she usually needs a week ‘to get [herself] ready’ to give blood. ‘They immediately sort of got really nasty and then thought that I was on drugs.’ Andi told staff she wasn’t ‘crazy’ but needle-phobic. ‘I can't cope with it. I've never been able to.’ Andi asked them to treat her for heat intolerance and let her go home.
The situation ‘became a bigger thing than what it ever should have been’. Doctors diagnosed her as ‘manic’ and kept her in hospital overnight under observation.
‘After, they've marked my medical records with me being manic.’
Since then, every time Andi seeks medical help staff treat her as if she has a mental illness and rarely investigate further.
Over the last few years Andi has been dealing with a bug infestation in her home. It became so bad it was in her furniture, clothes and hair. She has had to go to extreme measures such as shaving her head to keep herself bug-free.
Initially she asked the rental agent to organise a pest control treatment. It didn’t work but the agent kept trying to reassure Andi they’d dealt with the pests, saying, ‘It will be fine, don't worry about it, it will be okay.’
Andi contacted the pest control man directly and asked him if he could do a more thorough job and treat the ceiling and insulation. He told her it was her MS and she should see her doctor.
Next, Andi contacted an insect specialist to see if he could identify the insects so she could organise a more targeted treatment. After a brief discussion the specialist also told her it might be her MS and she should see her doctor.
When Andi spoke to one doctor ‘he’d already sort of discriminated against [her] because [she] was walking with a stick’. When she pleaded with him to help her and started to cry, he looked at her records and told her she had ‘mental issues’.
‘I feel that now my rights are relatively non-existent and no-one listens to me and they think I'm crazy and I can't prove to them without getting someone to actually help me.’
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.