Between sophomore and junior year of college, Cheryl’s world turned upside down as she began to feel mysteriously unwell. She started losing weight at a frightening rate, getting down to 105 pounds. Her doctors refused to believe that she was ill, going so far as to call Cheryl’s parents and tell them their daughter had an eating disorder and was lying about it. However, she was actually experiencing rheumatoid cachexia, a complication of rheumatoid arthritis that causes severe muscle wasting. As Cheryl continued to lose weight, her parents hired a concierge doctor to dig deeper, but even this doctor was dubious that something was medically wrong. Her disease might have continued to go undiscovered had Cheryl not contracted food poisoning, which set off a massive flare of RA, causing joints all over her body to painfully lock up. This joint pain clued her doctor to run the appropriate tests, and Cheryl finally received her diagnosis and began treatment for rheumatoid arthritis.
In episode 41 of the Major Pain podcast, Cheryl discusses how initial relief at being diagnosed with RA would turn to resignation as she came to understand the seriousness of her disease. She explains that rheumatoid arthritis is the autoimmune form of arthritis in which the body attacks the joints, very different from the more common osteoarthritis caused by general wear and tear. Since receiving her diagnosis she has been taking immunosuppressive drugs and biologics, rotating through the latter as her body adapts and renders them ineffective. She discusses the importance of therapy for coping with chronic pain and exhaustion, sharing how ACT (acceptance and commitment therapy) helped her come to terms with living in uncertainty. Cheryl has channeled her own health journey into becoming an occupational therapist, as well as supporting her community with the Arthritis Life podcast, TikTok channel and workshops aimed at passing on tips and tricks for others living with arthritic conditions. She is a passionate, knowledgeable advocate with first hand experience managing a difficult disease, and a valuable resource with many important messages to share.
This Monday, January 17th at 12PM PT Jesse will be participating in a virtual panel discussion on Invisible Disabilities with the ConnecTra Society. Register to join the Zoom workshop here: https://us02web.zoom.us/meeting/register/tZYqdOiurj8iGNPqO4l5V9in5L58SHHRHJpe
RESEARCH OPPORTUNITIES: https://rarepatientvoice.com/MajorPainPodcast