“Disability is not a Dirty Word:” Catherine’s Story of Fierce Hope & Young Patient Advocacy

What’s it like to be involved in autoimmune research, policy and advocacy while still in your 20s? On this episode, Chronically Catherine shares her personal story of being diagnosed with multiple overlapping conditions as a teenager including: immunodeficiency, postural orthostatic tachycardia syndrome (POTS), Ehlers-Danlos Syndrome (EDS) and migraine disease. Through sharing her own story publicly, Catherine learned the importance of disability representation and advocacy for young people. She also delves into why it is crucial to include the voices of young adults in the research and advocacy process.
Cheryl and Catherine explore the process of dismantling their own internalized ableism and challenging societal norms around what constitutes a "normal" life. They also challenge the idea that disability is necessarily a “bad” word. They emphasize the importance of self-care and finding joy in everyday activities, even if they require accommodation.
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