"But You Look Great" with Monique Gore-Massy
Out of Patients with Matthew Zachary · Matthew Zachary
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Show Notes
Monique Gore Massy spent 2.5 years cycling through New York City emergency rooms while her body shut down. Fevers hit 105. Her weight dropped from 122 pounds to 72 in 3 months. Hair fell out in clumps. No one ran an ANA test. Doctors blamed stress, old sports injuries, migraines. When a physician finally named it lupus, she added that she hoped it was not. Months later, Monique heard the words “get your affairs in order.”
In this episode, Monique details living with lupus nephritis, pericarditis, fibromyalgia, and the daily math of survival. She recounts arriving at a patient conference shortly after coming off crutches and requesting elevator access for support, only to face resistance at a health summit that claimed to center patients. She breaks down what it costs when industry extracts lived experience for free and calls it engagement. Listeners will hear what invisible illness looks like in real time, how bias delays diagnosis, and why advocacy without strategy leaves patients exploited instead of respected.
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