AT JUST 23, Carmel Johnson should be enjoying the prime of her life. Instead she suffers from more than 100 debilitating symptoms that see her spending most days bedridden and using a wheelchair to get around.
Unable to work or go to university due to her condition, she was not expecting Centrelink to reject her disability application.
Despite being sick for as long as she can remember, it took years for doctors to give Carmel a proper diagnosis. Last year she was finally diagnosed with Ehlers-Danlos syndrome, a connective tissue disorder that has caused her to develop multiple other chronic conditions. The condition means that even standing up for short periods of time can cause her to faint.
Due to gastro problems, Carmel’s diet has been limited to soup, and soon she’ll require a feeding tube to eat. Severely undernourished, she’s shed more than 15kg in one year alone.
“When I went to Vietnam in 2013 all the gut problems got worse because I got food poisoning. When I came back I got glandular fever, I felt like I was dying. I went to doctor after doctor after doctor and they all said to me ‘you’ll be all right. Work harder and go to the gym. Or try yoga, eat healthier’. But none of those things helped and those things actually made me a lot worse,” Carmel says.
According to The Ehlers-Danlos Society program manager, Jessica Adelman, EDS affects about 1 in 2500 people and there are 13 types of the syndrome. There is no current treatment for EDS and those with the syndrome are likely to develop other conditions including dysautonomia, gastrointestinal disorders, chronic fatigue, mast cell disorders, and neurological complications.
Taking more than 20 pills a day and visiting various specialists a week, Carmel’s exponential medical costs, amounting to $1700 on average each month, are draining her parents’ bank accounts.
The heavy financial burden of being sick drove Carmel to apply for Centrelink, as well as start a GoFundMe campaign.
With her mother pushing her in a wheelchair, Carmel arrived at the Centrelink office. Given just four days, including the weekend, to gather years of medical documentation together, her claim was rejected a week later.
“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,” Carmel says.
“Later we got a call and they said ‘your claim has been rejected, you didn’t have enough evidence’. They said ‘we need you to come in for an appointment to talk about getting a job’,” she says.
Before her condition deteriorated, Carmel was studying International Development at Adelaide University, as well as a diploma of Indonesian. The once high distinction achiever, has not only had to quit university and her job, but turned down her dream scholarship interning at an NGO in Indonesia.
“I went through a period where I had a migraine about 25 days out of every month. 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?’,” Carmel says.
Carmel runs an Instagram account @chronically_carmel, where she offers support to others with chronic conditions. Due to what she calls an ablest stigma, she has been labelled a “faker” and friends of hers have been left abusive letters for having disability permits on their cars.
From bus drivers closing doors on her to people asking if her walking stick is a prop, Carmel has been confronted by people who have told her she looks “too young” to have a disability.
“I think that a lot of people think that anyone can get on a disability payment and there’s a lot of people mooching off the system but they don’t actually know what’s going on. You can’t just look at a person and see how disabled they are,” Carmel says.
After news.com.au contacted Centrelink for a response, it swiftly moved to offer Carmel service recovery. In a phone call, staff apologised profusely to Carmel and admitted to their wrongdoing. While this means she may be able to resolve her application issues, it does not take away from the 100 respondents that have contacted Carmel claiming they have faced similar problems.
One respondent told news.com.au that she had waited over a year for Centrelink to process her disability payment. While another person complained their claim was rejected over the phone by a woman who thought that her dysautonomia claim was for a shoulder injury.
Others said they were forced to make job appointments, despite the travel rendering them ill. “They accidentally cut my payments twice even though I did everything asked of me. I was told that my disability was ‘all in my head’ so I should be able to work. Why are sick people being treated like criminals?,” one woman wrote.
A former Centrelink assessor also commented that she was unhappy with the process. She claimed, “It is a dreadful system for customers and staff. It is simply a numbers game on the computer. No matter how much information was provided, unless the numbers match the claim is rejected.”
Centrelink told news.com.au “we require any available supporting medical evidence about a person’s disability, injury or illness to ensure the assessment for Disability Support Pension eligibility is comprehensive and considers all available information.
“Under legislation, medical conditions must be permanent, fully diagnosed, treated and stabilised before the department’s health professionals are able to assess the functional impact of those conditions.
“The most common reason Disability Support Pension claims are rejected is because these criteria are not met.”
The Ehlers-Danlos Society’s Jessica Adelman says that those with EDS often struggle to access welfare payments as the condition, while relatively common, is underdiagnosed and misunderstood.
“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,” she says.
Carmel believes that if she is able to receive disability payments, she will be able to afford the medical treatments needed to improve her health. Far from the dole bludger stereotype, Carmel says she wants to give back to Australia once her health improves. Hopeful that she will one day be able to leave the house without getting debilitating migraines, Carmel says her dream is to finish university and start her own NGO.
“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. There is a lot that I think I could do and I am hopeful that I would be able to do one day.”
Story originally published at news.com.au by Eden Gillespie