By Wilhelmina Jenkins in #MEAction.
When I became ill in 1983 with what is now called ME/CFS, my life as I knew it was abruptly destroyed. I dropped into a world of pain, exhaustion, and dozens of other baffling symptoms, most particularly the cognitive disruption that robbed me of the life in physics that I loved. After five years of confusion and loss after loss, I received a diagnosis. Even though there were no effective treatments, I knew that I was not alone, that there were many others whose stories were strikingly similar to mine.What I was not prepared to learn was that, as an African American woman, I was considered to be an anomaly, an oddity, a rarity. Black people were not supposed to have this disease.
I poured over article after article about this disease. Every one had a picture of a white woman in distress, accompanying a story of a person with my disease and my story, but not my ethnicity. Still worse, I began to read absurd explanations from those in authority supposedly explaining why Black people did not have this disease – that we had been exposed to more pathogens at an early age, for example. Meanwhile I was hearing stories from all over the United States about other Black people whose lives were crushed by this disease, just as mine had been. Those responsible for the health of the people of the United States did not acknowledge them.