Medical invalidation in the clinical encounter: a qualitative study of the health care experiences of young women and nonbinary people living with chronic illnesses

BACKGROUND: Medical invalidation is a well-documented phenomenon in the literature on chronic illnesses, yet there is a paucity of research capturing the perspectives of young adults living with chronic illnesses, and especially of those who are gender diverse or from groups that face broader societal marginalization. Our study sought to answer the following question: How do young women and nonbinary adults living with chronic illnesses characterize their experiences of medical invalidation and its impact on their health and well-being? METHODS: This was a patient-oriented qualitative study informed by feminist disability theory. Eligibility requirements included self-identifying as having a chronic illness, self-identifying as a woman or nonbinary person receiving health care in Manitoba, and being between the ages of 18 and 35 years. Participants took part in online arts-based workshops and subsequent focus group discussion in November 2021. RESULTS: Eight women and 2 nonbinary individuals participated. Medical invalidation was experienced by all of the participants at different points in their illness journeys and took a variety of forms depending on their social location and their particular illness, positioning invalidation as an issue of in/visibility. We identified several consequences of medical invalidation, including internalizing invalidation, overcompensating for their illness, avoiding care and, ultimately, symptom intensification. We also present participants’ recommendations to avoid medical invalidation. INTERPRETATION: This study provides insight into the phenomenon of medical invalidation, understood as the act of dismissing, minimizing or otherwise not taking patient concerns seriously. We suggest person-centred care may not be enough, and critical reflexivity may help avoid unintentionally invalidating patient experiences.