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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.
Disclaimer
ME/CFS South Australia Inc aims to keep members informed of various research projects, diets, medications, therapies, news items, etc. All communication, both verbal and written, is merely to disseminate information and not to make recommendations or directives.
Unless otherwise stated, the views expressed on this Web site are not necessarily the official views of the Society or its Committee and are not simply an endorsement of products or services.
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'They Think Disability Is Almost Worse Than Being Dead'
Wednesday 27 November 2019
 Tilly Moses |
'They think disability is almost worse than being dead'
"I won't let you make me feel bad for the things I cannot do, I am tired of being talked over by people like you."
To watch Tilly Moses perform her folk music on stage, there are no visual clues she's disabled - although the message is there loud and clear in some of her lyrics.
A year ago, Moses was diagnosed with fibromyalgia, a chronic condition that causes pain and fatigue. It often comes after a big shock to the immune system: Moses, who grew up in Stanton, Suffolk, had meningitis when she was 11.
She says her fibromyalgia can leave her so tired she passes out. It also affects her cognitive function and she can be in a lot of pain, and she sometimes has to use a walking stick or a wheelchair.
"When people see me, because I'm young and I'm performing, people assume you can't be those things and be disabled."
The misconception annoyed her and so she started writing songs about it.
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