"But You Don't Look Sick": Medical Gaslighting and Disability Identity Among Individuals Living with POTS and ME/CFS
Haverford College. Department of Sociology
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Some chronic illnesses are routinely screened for, easily recognized by physicians, and have effective treatments or perhaps even acure. Others are less-easily detected. Conditions that have a wide variety of subjective symptoms and do not appear on routine laboratory investigations present a specific diagnostic challenge. Patients with such conditions often experience medical gaslighting because the physician is unable to provide an explanation other than "it's all in your head." POTS and ME/CFS are two conditions that allow us to observe this phenomenon. The mostly-invisible nature of these illnesses makes them an ideal case for studying the ways in which health, illness, and disability are seen in our society. Doing so illuminates the ways in which capitalism dictates our bodily experiences. Using the narratives of 477 survey participants and 59 interviewees living with POTS and ME/CFS, this paper hopes to explain some of the difficulties of living with chronic, invisible illness by focusing on experiences of medical gaslighting and ableist microaggressions. I also examine how these experiences, when combined with internalized ableism, shape people's decision to self-identify as disabled or not.