Carmel Johnson has struggled her whole life to have her health taken seriously. Last year she was diagnosed with Ehlers-Danlos syndrome which causes problems with the connective tissues in her body.
She suffers gastrointestinal problems, can’t stand for long, and takes over 20 pills a day to help manage her condition, which occurs in 1 in 2500 people.
‘I went through a period where I had a migraine about 25 days out of every month,’ Carmel told news.com.au.
‘I used a walker for my last semester that I was at uni and that was pretty difficult.
'I had trouble getting on the bus and people would stare at me all the time like ‘what is this young person doing with a grandma walker?’
Unable to study, and unable to work, Carmel applied for disability assistance through Centrelink and was given a massive set of documents to fill out to apply.
‘It was a huge document that I had to write in that short amount of time. I was calling the specialists asking for letters to explain my disability and none of them could get it to me in those four days,’ she said.
Her claim was rejected and she was told by Centrelink that would need to get a job - something she hasn't been able to do since her illness took over her life.
She’s hoping to make people aware that those receiving disability aren’t just trying to rort the system.
‘You can’t just look at a person and see how disabled they are,’ she says, adding that she has been told her problems are all in her head and she is ‘too young’ to have a disability pension.
Carmel’s struggles also come from her condition being quite rare. Jessica Adelman from The Ehlers-Danlos Society said:
‘While many with EDS certainly have severe enough symptoms to warrant welfare or disability status, it can be hard to obtain these services.
‘Those who evaluate these applications rarely have knowledge of or experience with the Ehlers-Danlos syndromes.’
Far from wanting to mooch off of the system, Carmel has high hopes for her future if she could just get some support.
‘If I had the disability payment from Centrelink and I had the support that I need from the right doctors, I do believe that I could work up to a level where I could gain weight and then have more energy,’ says Carmel.
‘There is a lot that I think I could do and I am hopeful that I would be able to do one day.”
Since being interviewed Carmel says in an Instagram post that she was contacted by Centrelink for a 'service recovery'. She added that while this might be good news for her plans, she knows that she's not the only one fighting to get the support they deserve.
'I am not going to be quiet about this until they help everyone else as well! 💪🏼😊💙' the courageous woman says.
This article first published on New Idea.