ME/CFS South Australia Inc supports the needs of sufferers of Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and related illnesses. We do this by providing services and information to members.
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Dealing with chronic fatigue
Thursday 25 August 2011
YOU wake up feeling as though you’ve just been hit by a bus.
It’s like a concrete jacket is weighing your limbs down.
Family members call you lazy and tell you to pull yourself together. Your boss thinks you are faking sickies. Your teachers call you a slacker. Your doctor just puts it down to depression.
Chronic fatigue syndrome can be a long and very lonely road. Sometimes, the hardest part is dealing with how others react to you.
ME/CFS health promotion project co-ordinator Alison Copley has seen all kinds of discrimination.
“It’s been trivialised, misdiagnosed, mistreated and demeaned by everything from schools and government agencies to legal systems and Centrelink,” Ms Copley said.
The condition can follow severe infections or physical trauma, and be linked to food intolerance and reduced blood flow to the brain.
After 10 years of not knowing why his body simply shut down, Evan was diagnosed with chronic fatigue syndrome by his chiropractor.
“I wasn’t far from suicide, I hated my body so much,” he said. “I’ve reached the stage where I don’t even tell anyone I have CFS. It’s too hard to try and explain.”
Pam, a former teacher whose son also has CFS, has been verbally abused in public. “People would come up in the supermarket and accuse me of being a bad mother, tell me that he just needs to ‘pull himself together’,” she said.
“For my son, it’s almost lucky that I have it because I know what he is going through.”
Living below the poverty line is common for sufferers, who can spend thousands of dollars on medical bills and supplements, with no government subsidies.
“Employers can trivialise the condition and see people as a burden, not willing to reduce their hours,” Ms Copley said.
Pam used to be able to “push” through the fatigue, but knows that is not a healthy solution.
“The thing is I would rather work three full-time jobs than have this. That’s the paradox you face. People call you lazy,” she said.
ME/CFS Australia, based in Dandenong, provides information and advice, as well as running a monthly support group. The service offers self-help courses which can be over the phone. Phone 9791 2199 or visit mecfs-vic.org.au.
The above originally appeared here.
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