People With Super Rare Disorders And Medical Conditions Are Sharing What It Took To Get Diagnosed

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“In 2017, I started having extreme burning pain in my hands and feet — they would turn bright red and swell. The flare-ups were intermittent and triggered by heat.”

“In addition to being painful, it was very noticeable by others. When I went to doctors, they told me it wasn’t anything to worry about. Over the next two years, the symptoms got worse, and I started having symptoms in my eyes (burning, redness, pain). After years of misdiagnoses, condescending remarks from doctors, and thousands of dollars, a neurologist and a cornea ophthalmologist listened. I was diagnosed with erythromelalgia, a rare vascular peripheral pain disorder, and corneal neuropathy, a rare pain disease caused by damage to the nerves in the cornea. Unfortunately, the two diagnoses are hard to treat, chronic, and can be debilitating. I am always in pain and tire easily. 

It’s impacted my ability to work, socialize, and sleep. I’ve had difficulty getting time off from my employer to go to appointments and have even been written up for going just a few hours over my sick time. But, I’m carrying on. I’m very lucky to live in a city where I have access to good health care. I exercise, eat well, drink water, take my medications, and go to my appointments. I am slowly learning to live with pain and really soak in those good days. 💕”

—Anonymous