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. For Catherine, participating in activities like surfing, albeit in an accommodated manner, brings fulfillment and contributes to her definition of living a good life with chronic illness. Throughout the conversation, Cheryl and Catherine underscore the values of self-advocacy, self-acceptance, and finding happiness on one's own terms.
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Rheum to THRIVE, an online course and support program Cheryl created to help people with rheumatic disease go from overwhelmed, confused and alone to confident, supported and connected. See all the details and join the program or waitlist now!
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