What is it like to have a disease that nobody can ‘see’ and which society can shame you for talking about? To mark International ME/CFS Awareness Day, Hannah Gibson writes about her experience with ME/CFS, and the struggle to have her condition legitimised in Western medicine.
When I was a young girl, my mother says that I skipped rather than walked. I stood on her knees at church and danced to the music. I pestered my father on the farm with endless questions about anything I could think of. I wanted to know everything. This did not slow me down. I want you to take a moment to imagine the amount of energy, life, and vitality this girl had.
The turning point, at 10, came after I became sick with a viral infection that was not considered dangerous. Yet as time went on, I never seemed to recover; rather I developed severe migraines, muscular pain, extreme fatigue, cyclical vomiting and a myriad of other symptoms that left me sleeping around the clock.
The doctors initially considered a brain tumour, then juvenile arthritis, and other conditions that might explain what was wrong. Doctors became frustrated, I could see they desperately wanted to find an answer they could treat, or at least pinpoint.
