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

Explicit content warning

04/11/24 • 66 min

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.

Medical disclaimer:

All content found on Arthritis Life public channels was created for generalized informational purposes only. The content is not intended to be a substitute for professional medical advice, diagnosis, or treatment.

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For full episode details

For full episode details including hyperlinks to things discussed on this episode, go to the episode page on the Arthritis Life website.

Previous Episode

Overcoming Denial, Confronting Food Phobia, and Embracing Online Communities: Ray’s AS and OA Story

Trigger warning: orthorexia / eating disorders; fear of foods

In Episode 122, Ray shares the shock and emotional turmoil he experienced upon receiving his diagnoses of rheumatoid arthritis (RA), ankylosing spondylitis (AS), and osteoarthritis (OA). He described the initial denial he felt and the process of coming to terms with his diagnoses, acknowledging the emotional toll it took on him and his family.

Cheryl and Ray discuss coping strategies, the role of social media, and finding a supportive community online. He also explains the importance of advocating for oneself and seeking out reliable information and resources, taking a proactive approach to managing his conditions, and finding the right balance between pushing through pain and listening to his body's needs.

Episode at a glance:

Diagnosis Story: Ray describes his diagnoses and experience living with rheumatoid arthritis (RA), ankylosing spondylitis (AS), and osteoarthritis (OA).
Navigating Multiple Conditions: Ray explains the complexities of living with multiple chronic illnesses, including challenges related to symptom management, accessing healthcare, and adjusting to lifestyle changes.
Social Support and Connection: Cheryl and Ray discuss the significance of social support networks, in providing connection and understanding for individuals living with rheumatic diseases.
Self-Advocacy and Empowerment: Ray emphasizes the importance of self-advocacy and seeking out reliable information and resources to empower oneself in managing chronic illnesses
Acceptance and Resilience: Ray shares insights into his journey from feelings of denial to acceptance and living a fulfilling life despite health challenges.

Medical disclaimer:

Episode Sponsors

For full episode details including a transcript & video:

Go to the episode page (coming soon) on the Arthritis Life website.

Next Episode

What do People with Rheumatoid Arthritis Need to Know about COVID-19 in 2024?

Dr Dave & Dr Campbell answer Cheryl’s burning questions about long COVID, vaccine efficacy and safety for people with autoimmune conditions, and potential links between autoimmunity and long COVID. They also talk about cutting edge research and new therapies including CAR T-cell therapy.

Dr. Campbell encourages participation in research studies to better understand these complex issues. Dr. Dave emphasizes the need for precision medicine approaches in treating autoimmune diseases like RA, where individualized treatment plans can be tailored to each patient's unique needs. Despite the challenges posed by autoimmune diseases and COVID-19, they express optimism about the future of treatment options and the ongoing medical advancements.