Erythromelalgia—or “Man on Fire Syndrome”— is a neurovascular condition that causes episodes of pain on one’s skin that feels similar to, well, burning. By “burning,” I don’t mean that parts of the body just become very warm. Put simply, once an episode flairs, erythromelalgia makes you feel like you’re burning alive.

An illness that feels stranger than fiction, erythromelalgia is, indeed, very rare (only 1 in 100,000 people in the U.S. have reportedly been diagnosed), which causes many people to misunderstand or even disregard this condition as anything truly serious.

Writer Je Banach pulls back the curtain on what living life with erythromelalgia looks like, and calls for an open, honest dialogue when it comes to uplifting people who have misunderstood conditions like hers. Because it is one thing to have a life-altering chronic illness—it is another to be believed that you have one.

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