Andrew Bretherton was 26 when he caught glandular fever. Even after he shook off the disease, his body hasn’t yet fully recovered.
“I can’t even get out of bed to go to the toilet or brush my teeth or have a shower. Just doing basic, everyday tasks is like a marathon,” Andrew told Hack.
“I felt I would constantly be tired or my legs were in constant pain and I had a lot of digestive problems as well. Doctors couldn’t really pinpoint what was causing it.”
He spent thousands of dollars seeing specialists. Everyone from a neurologist, to gastroenterologist, to sleep therapists. Even if you do end up qualifying for the Disability Support Pension, the Government won’t cover these costs – that’s up to the patient.
Finally, at the start of last year, Andrew was diagnosed with myalgic encephalomyelitis, or ME.
You may know it as chronic fatigue syndrome, but some sufferers of the disease reject that title because they think it down-plays the severity of the illness.
The disease has many varied and debilitating symptoms – from sleeplessness, to cognitive difficulties (which Andrew refers to as ‘brain fog’), to digestive problems.
Misdiagnosis of ME common
Less than one percent of people in Australia suffer from it – that’s up to 240,000.
But because there’s no test to diagnose it, sufferers often say their symptoms are dismissed or misdiagnosed.
Research done by ME advocates say doctors miss the symptoms of the disease four out of five times.
President of the Royal Australian College of GPs, Dr Bastian Seidel, said doctors need to listen to their patients to make sure their health needs are being met.
Medical advice to engage in exercise or undertake cognitive behavioural therapy – the therapy that counsellors often use when you see them for mental health concerns – have been discredited in the treatment of ME.
Even after his diagnosis, doctors kept giving Andrew the wrong advice.
“She said oh it’s terrible you have chronic fatigue syndrome, just try to exercise and stress less,” he said.
Mental illness often accompanies ME as a secondary symptom, Bastian said.
“Of course those patients are going to have severe mental side effects, and that’s why more and more patients who really have Chronic Fatigue Syndrome are increasingly isolated. They don’t leave the house, they don’t talk to people,” he said.
Getting government support
Because ME is so difficult to pin down and presents differently in different people, it can make it even harder to get government support.
Andrew’s illness started taking a real toll on him at work. He tried to explain it to his employers, but they didn’t get it.
“They thought I was lazy, basically,” he said.
He applied for the Disability Support Pension (DSP) but found the process exhausting while battling his illness.
Andrew tried to get a social worker through the Department of Social Services (DSS) so he could navigate the complicated system. He was told he didn’t qualify.
Getting onto the DSP isn’t an easy task – you have fulfill a lot of criteria, like proving you have a permanent disability that means you can’t work more than 15 hours a week. You have to satisfy a points system that rates your ability to work and function.
“Each person’s level of medical impairment must be assessed on an individual basis to account for the varying spectrum of severity and stability that can occur with a particular medical condition,” a DSS spokesperson told Hack.
Even if you get on the DSP, your case could be reviewed at any time.
“If a person is subject to a review, then eligibility for DSP is determined based on the medical evidence provided and the outcome of assessments undertaken as part of the review process,” the spokesperson said.
“Some people will also be required to attend a Disability Medical Assessment by a Government Contracted Doctor. These assessments provide expert advice about the impact of medical condition(s) on the person’s capacity to work.”
But Andrew reckons some days it’s hard for sufferers of ME to leave the house on any given day. And filling out forms isn’t easy, either.
“The side effects of Chronic Fatigue Syndrome is the neurological aspects,” he said. “Sometimes it’s hard to find words when I’m talking.”
You can listen to Hack‘s interview with filmmaker Jennifer Brea about Unrest, a movie on her experiences of living with ME.
Author Shalailah Medhora