Written by Casey Hersch, MSW, LCSW
October 6, 2020
Chronic illness leads to many diagnostic dead ends
I have spent my life dealing with chronic illness. My symptoms were confusing to my doctors because they didn't fit the criteria for any singular diagnosis. As a teenager I was severely fatigued and was diagnosed with chronic fatigue syndrome. I was shunned by my peers who spread rumors that I had AIDS. I felt unheard and misunderstood when I was told my debilitating symptoms were "all in my head" (a common sentiment experienced by women whose complex symptoms are a 'medical mystery'). Disparities in women's healthcare and treatment added to the vicious cycle of diagnostic confusion.
The BBC's Health Gap series highlights how women and men experience the healthcare system and their own health in very different ways. Maya Dusenbery, author of Doing Harm, states that "Women are more likely (than men) to wait longer for a health diagnosis and to be told it’s ‘all in their heads.’ That can be lethal: Diagnostic errors cause 40,000-80,000 deaths in the US alone." In Doing Harm, Dusenbery points out that it takes an average 12 months for men to receive a diagnosis of Crohn's disease; for women, 20 months. It took decades to confirm I had Crohn's disease, an autoimmune inflammatory disease affecting the small and large intestine. By the time I was properly diagnosed at age 30, I was seriously ill.