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The Illusion You Will Be Forever Able-Bodied and the Limits of Empathy
This is an edit of something I wrote in 2016, which I return to read every now and then. Sometimes I tinker with it, like now. I wrote it soon after I first became a professional advocating for patients with chronic fatigue syndrome and myalgic encephalomyelitis, a set of misunderstood chronic and severely debilitating physical illnesses that some UK professionals still dismiss as psychosomatic, all in the head.
These patients are often stigmatized. Many health professionals treat them with some suspicion because it is so mysterious how they went from what was often seemingly a full and active and healthy life to being bed ridden. Minimally exerting themselves physically or emotionally can further debilitate them, often suddenly and dramatically so. This post-exertional malaise is a cardinal symptom that distinguishes them from the clinically depressed or other persons with health conditions like multiple sclerosis or patients with cancer-related fatigue tied to treatment with chemo or radiation.
More about CFS and ME another time.
I get to my message to these patients at the end of this essay.
But first, I discuss a lesson I learned from a patient with diabetes who was referred to me years ago, because he was so frustrating to the specialty…