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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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In My Chronic Illness, I Found A Deeper Meaning
Tuesday 13 February 2018
 (Image: Dadu Shin) |
In My Chronic Illness, I Found a Deeper Meaning
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I went from doctor to doctor looking for answers, but overnight I had gone from being a trusted rabbi and chaplain (who works with seriously ill and dying people on hospital medical teams) to a “hysterical” chronically ill person. Though I had seen it happen to my clients, I now understood firsthand that being disbelieved is nearly universal for people with chronic illnesses, especially those that are largely invisible or hard to diagnose or both. I had believed that as a health care professional, equipped with skills and advocates to navigate the system, I would be treated differently. I soon learned how hubristic that was.
Eventually, because of the tireless advocacy of my wife, I was diagnosed with central nervous system lupus (an autoimmune disease that attacks the brain and central nervous system), as well as fibromyalgia, chronic fatigue syndrome and complex migraines. My lupus diagnosis would later be taken away and then given back countless times as suited the needs of health insurance and disability insurance companies to sort and manage me and decide how much care I was entitled to. The needs of my body were virtually irrelevant in this process as my diagnosis become a monetized affair where I had to jump through increasingly difficult hoops to “prove” it.
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Registered Charity 3104
Email:
sacfs@sacfs.asn.au
Mailing address:
PO Box 322,
Modbury North,
South Australia 5092
Phone:
1300 128 339
Office Hours:
Monday - Friday,
10am - 4pm
(phone)