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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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Young And Forever Sick: 'They Didn't See Me As A Person Who Had Dreams'
Monday 2 March 2020
 For many young Australians with chronic illnesses, the path to diagnosis has many roadblocks. (Photograph: Viacheslav Iakobchuk/Alamy Stock Photo.) |
Young and forever sick: 'They didn’t see me as a person who had dreams'
More than a third of young Australians live with one or more chronic illnesses – but growing up in fear of death can have its upsides.
A strange mixture of terror and outrage floods your brain when your doctor says, “I had a patient like you, and when she missed her meds, her heart and lungs stopped. She died.”
Right. I get it: I need to take my epilepsy medication religiously.
It had already been a long road to this point. Two major nighttime seizures, two ambulance rides, claustrophobic brain scans, and an intense three-day relationship with 20 itchy electrodes. They revealed a lot: my heart sank as I was officially diagnosed with nocturnal frontal lobe epilepsy.
The drama of a life-threatening event is less of a sexy Grey’s Anatomy storyline and more like an emotionally exhausting House episode.
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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)