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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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How Poetry Helps Me Face An Invisible Illness
Thursday 16 May 2019
 Chloe Hoy-Bianchi |
How Poetry Helps Me Face an Invisible Illness
I wrote the poem “I don’t want to be in my body no more” for myself. I needed to come to terms with what my body is experiencing. If I’m being honest, I still haven’t fully accepted it. The years of disbelief from medical professionals have shifted the way I see myself.
“There is nothing wrong with you. You’re fine.” I heard those eight words over and over again from doctors, lab technicians, nurse practitioners; I even had a couple of chiropractors tell me that I was just tense from hunching over my computer or carrying too many books. I have been told that the pain I feel is caused by stress, that the extreme dizziness and migraines are simply vertigo or dehydration. I have been told that my memory issues stem from exhaustion. I have been told that my excruciating, full-body pain during sex is normal because I’m young and inexperienced. I have been told that I may be infertile, and the pain and trauma I carry surrounding that possibility has been swept entirely under the rug. I have been told, I have been told, I have been told.
Rarely have I been heard.
A scientific study confirmed the existence of fibromyalgia as a medical condition in 1981. Nearly four decades later, there is still a gaping hole of knowledge in the medical community. A common mistake in diagnosing patients with invisible illnesses is treating symptoms as individual issues rather than seeing how they fit together. A combination of symptom-specific treatments and misdiagnoses made my journey to a diagnosis of fibromyalgia last over a decade. This is a common story for people with chronic and invisible illnesses. My story began at a very young age.
I don't want to be in my body no more: a visual poem
I don't want to be in my body no more: a visual poem from Sojourners on Vimeo.
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