Reflections of Fibromyalgia

by | May 8, 2023 | Patient Voice

Reflections on Fibromyalgia

This is the owl I got at the children’s hospital gift shop when I received my Fibromyalgia diagnosis at age eleven, almost two decades ago. I am now thirty years old and finishing a degree in Disability Studies, and my life with chronic illness inspires both my creative and academic work. 

After I left the gift shop the day of my diagnosis, I remember feeling dizzy and confused, just looking around the children’s hospital and wondering what happens next. I was told I may have this forever. That’s the thing that confused me and scared me the most. Adults struggle enough with the concept of “chronic illness”-how would a child struggle any less? What happened next was that my life became slightly different than other kids my age. I had to get used to swallowing pills with ice cream, frequent trips to the nurse’s office, frequent doctor’s appointments and blood tests, absences, leaving school early. The most profound feeling I remember was the fear that others would think I was faking, which was something I unfortunately did encounter sometimes. Nobody with a chronic illness should have to worry that others will think they’re exaggerating or faking it. I dream of a world where ableism doesn’t exist.

Keene New Hampshire


These thoughts were submitted as part of the Reflections of ME/CFS and FM and Long COVID Awareness Day Virtual Event on May 9th, 2023.

#MillionsMissing #MillionsMore #Hope4MECFS #Hope4FM #Hope4LongCOVID

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