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

<h2>Episode Summary:</h2><p>🛑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) 🛑</p><p>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).  </p><p>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.</p><p>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!</p><h2>Episode at a glance:</h2><ul><li><strong>Introduction to my parents and discussion about my early life</strong> (healthy, active lifestyle, no drugs or risky behaviors).</li><li><strong>Cheryl’s Early diagnosis story (2001-3):</strong> 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.</li><li><strong>Medical Gaslighting:</strong> My parents dilemma of whether to believe me or the gastroent