Dr. Sarah Cohen Solomon on Fear, Expectations, and Rest
This episode stopped us in our tracks. Dr. Sarah Cohen Solomon has Ehlers Danlos Syndrome. She became a physician, not in spite of it, but because of it.
Dr. Solomon is a pediatric physician who specializes in hypermobile Ehlers-Danlos syndrome and lives with it herself. She discusses the fear patients feel in medical settings—even when the patient is a doctor—and why clinicians often underestimate it. She also challenges the use of inspirational patient stories that can create unrealistic expectations for others with chronic illness. Her message is clear: every patient’s path is different, and rest is not a weakness but an essential part of health.
“The point of the content when I talk about the journey part is to understand how to do it step by step so that it is less difficult for you than it was for me.”
“When I sit with a new physician myself, I still have to sit there and be like, “OK, brain, you know this information…it’s OK.” And it’s scary. So we have to understand that if you don’t have that background, how much more scary it is.”
“It’s sort of like either you’re the Paralympian or you’re a drain on society. And that’s just horrible. We need to have nuance and individuality in what people experience and what they can accomplish.”
— Sarah Cohen Solomon, MD
Key Takeaways
- Bring pen and paper to every specialist appointment. Your brain will go blank, even if you’ve prepared
- Bring an advocate with you to appointments whenever possible
- Don’t measure your journey against another patient’s even someone with the same diagnosis
- When you read or share an inspirational patient story, ask: does this show the hard parts too?
- If you’re a parent: seek realistic roadmaps, not highlight reels, when researching your child’s condition
- Give yourself permission to schedule deliberate, intentional rest. It counts as care
- Push back when a diagnosis is dismissed because you don’t fit “typical” guidelines
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