Cheryl's Diagnosis Story Twenty Years Later: Featuring Cheryl's Parents

Episode Summary:

🛑Trigger warning: discussion of eating disorders (I did not have one but was accused of lying about causing my weight loss and hiding an ED) 🛑

In this episode, my parents and I share our memories of my diagnosis story, which covers roughly 2001-2004.This includes a discussion about the profound confusion we all experienced when I went from a healthy, robust student athlete to having a  “mystery illness” that doctors keep insinuating is “just anxiety” (or an eating disorder).  We also share how we lost faith and trust in some doctors after experiencing medical gaslighting, yet we also found hope in the competency and empathetic care of other doctors (particularly in rheumatology).  

We share our mixed reactions to the diagnosis of rheumatoid arthritis, and my parents open up about what it’s like to have a child get sick who’s a young adult - not a kid anymore but not a fully independent adult either.

My parents also share their advice to other parents of children or young adults who are sick but not yet diagnosed, as well as their best advice for newly diagnosed people with rheumatic diseases. This is a must listen!

Episode at a glance:

• Introduction to my parents and discussion about my early life (healthy, active lifestyle, no drugs or risky behaviors).
• Cheryl’s Early diagnosis story (2001-3): Going down the gastroenterology path. We initially addressed systemic symptoms (stomach issues, eye issues and fatigue). The gastroenterologist did many procedures (including an endoscopy, barium swallow and pH manometry) then said nothing was wrong other than “the relationship between mom and daughter” (insinuating we were too close or perhaps both “too anxious”). He then did a gastric emptying scan and diagnosed me with gastroparesis (slow motility - a form of dysautonomia) but still said nothing else was wrong.
• Medical Gaslighting: My parents dilemma of whether to believe me or the gastroenterologist and others who accused me of having “nothing wrong” and just being a hypochondriac: how they chose to believe me despite the medical gaslighting from docs; how it was confusing that i could just get sick out of seemingly nowhere, it just didn’t make sense. My dad knew I didn’t have an eating disorder.
• 2003: Hiring a concierge doctor who initially thought it was just anxiety, but eventually in summer 2003 once my joints were hurting more she ran more bloodwork and preliminarily diagnosed me with RA.
• Immediately after diagnosis - memories of the first trip to the rheumatologist and starting meds: relief, confusion, a whiplash from feeling not believed to feeling believed and that this is very serious; discussions about whether to start medications or not; my mom opened up about realizing she could advocate for me but wasn’t the expert in the medications;
• Cheryl returns to New York for final year of undergrad and experiences medicated remission for 6 years - end of “phase 1” of her RA journey, which became more bumpy and complex after that first remission ended.
• My parents advice to others: My parents share their best advice to other parents who may be in the position of advocating for their children

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.

Episode Sponsors

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!

Full episode details including video and transcript

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