My mom sweetly calls me her problem child because since day one I was a medical diagnostic failure. Dozens of doctors listened to my symptoms and referred me to the next specialist. After many years I gave up trying to understand. No matter how much I wanted to believe in doctors, there’s only so many “it’s all in your head; there’s nothing wrong with you” and “I don’t have time for this” looks you can take before your confidence deteriorates. My health issues didn’t go away, so I ended up back in sanitized offices, now with a complete distaste and lack of faith in the specialists’ ability to actually help. This was magnified by an allergist improperly trying to test if I had celiac disease, resulting in my face swelling up for weeks. He wouldn’t treat me for the reaction. He called me a broken seesaw. No referral and no continued investment or research.
It wasn’t until 2019 when I was in so much jaw pain that I couldn’t eat for days that I ended up seeing a doctor again. He said I likely had degenerative arthritis, probably needed surgery, and referred me to one of the world’s leading maxillofacial surgeons in Seattle, Dr. Jason Pehling.
I walked in terrified, and walked out with more information about my conditions than anyone had ever given me. He suspected I had hEDS and referred me to a physiotherapist (who had me diagnosed within five minutes). He also opened my eyes to the condition of MCAS, a condition affecting the mast cells of the body and causing symptoms I’ve been dealing with my entire life. Following appointments with a rheumatologist and neurosurgeon confirmed Fibromyalgia.
My story is one like many Zebras’. Endless doctors, endless frustration. It took a specialist who thought outside of the box and wasn’t willing to just treat the symptoms for me to discover my condition, and to him I am forever grateful. It hasn’t been easy, but had he just stuck to his script I wouldn’t be who I am today.