Janey
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Janey is in her 50s and has multiple chemical sensitivity (MCS).
‘I react to everyday chemicals in the environment,’ Janey told the Royal Commission. ‘I can have exposures anytime, anyplace. I can have them shopping or at home in my own environment, which is primarily fragrance free as best I can.’
A doctor diagnosed Janey’s MCS several years ago, but it ‘crept up’ on her during a long career in the health system.
‘At work I would have reactions to staff perfume. I would have reactions to the bleach they used in the toilets. I would have reactions to the air fresheners that they used … and they’ve got a warning on the back that if you have multiple chemical sensitivity they’re dangerous.’
Janey’s reactions include rashes and seizures.
‘I can’t speak properly. I mix things up. I don’t know peoples’ names all of a sudden – people that I’ve known for years.’
Her food allergies also increased and she had to take long periods of leave. Not long after her diagnosis, she lost her job.
‘My doctor had said that they needed to go fragrance-free and they decided that that wasn’t a decision that they could do. Whilst I was disappointed that I was terminated, I understood because I had a very extreme condition at the time. I was very unwell and so I started losing massive amounts of weight.’
Janey said many doctors believe MCS is ‘primarily a psychiatric condition’.
‘I acknowledge that I have got severe anxiety. Who wouldn’t have anxiety with a 25-year history of severe reactions, more so in the last [few] years to medication, foods and the list goes on.’
Janey said few doctors make allowances for people with MCS.
‘When I go to the clinic I am expected to sit in a room where everybody is just wearing fragrance galore … I’ve asked, “Can I wait in a separate room where I’m not exposed to so much fragrance?” And that’s been denied. I’ve waited out in my car.’
Janey said the NDIS also denies her support.
‘It’s around a permanent debility of my condition. All my doctors say this is permanent … The NDIS say, “Well, hang on a minute. You haven’t exhausted all avenues.” So they tell me I need to go to another doctor or I need to medicate … I can’t continually look for medications because the reactions [to medication] are just horrific time and time again.’
Janey said Australia, unlike some other countries, is yet to recognise MCS as a disability.
‘People with MCS fragrance sensitivity must be able to access health and allied health care. I shouldn’t have to fight tooth and nail to get my doctor not to be wearing fragrance … It’s not just for people with MCS, it's for people with a barrage of medical conditions.’
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.