Communicating with EDS Patients: Provider Guidance That Builds Trust

How to engage, validate, and empower people with complex chronic conditions and connective tissue disorders.

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Patients with Ehlers-Danlos Syndrome (EDS), POTS, MCAS, and other overlapping conditions are often survivors—not just of illness, but of medical harm, dismissal, and misdiagnosis. Many have been told “it’s all in your head” or that their symptoms are exaggerated or impossible.

These patients need more than treatment. They need trauma-informed, trust-based communication that honors their lived experience.

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Why Communication Matters in Chronic Care

Poor communication doesn’t just feel bad—it causes harm.

• Patients delay or avoid care due to past invalidation

• Incomplete or rushed communication can result in misdiagnosis

• Lack of clear expectations contributes to provider burnout and patient mistrust

Empathic communication is clinical care. It builds better outcomes, stronger alliances, and more efficient visits.

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Principles of Effective Communication with EDS Patients

1. Validate First—Even When You Don’t Understand Yet

• “I believe you.”

• “I can tell you’ve been through a lot.”

• “Your symptoms are real, even if they don’t fit in a neat diagnostic box.”

Validation opens the door to cooperation. Without it, there’s no trust—and no healing.

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2. Be Curious, Not Defensive

EDS patients often know more about their condition than generalists. That’s not a threat—it’s a resource.

Try:

• “That’s interesting. Can you tell me more about what you’ve learned or experienced?”

• “Let’s look at this together and see how we can build a plan from both sides.”

Avoid:

• “I don’t see anything wrong here.”

• “There’s nothing I can do if your labs are normal.”

• “Let’s not go down the rabbit hole.”

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3. Use Strength-Based Language

Instead of saying:

• “There’s no cure, so you just have to live with it.”

Try:

• “There’s no cure yet, but there are ways to improve your quality of life and reduce symptoms. Let’s focus on what helps.”

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4. Be Transparent About Limitations

Patients value honesty over false promises.

Try:

• “This isn’t my specialty, but I want to learn more and collaborate with those who know this better.”

• “I may not have all the answers today, but I’m here to support you through this.”

Then refer to trusted specialists or programs (like the Ehlers-Danlos Society ECHO Program) for collaboration.

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5. Respect Energy and Cognitive Limits

Many patients with EDS and comorbidities live with brain fog, fatigue, or sensory overwhelm.

Best practices:

• Use simple, plain language

• Pause and ask if your explanation is making sense

• Summarize key points in writing or offer handouts

• Offer telehealth when appropriate

• Allow time for questions without rushing

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6. Ask About Their Lived Experience

Instead of asking only what hurts, ask:

• “What does a typical day look like for you?”

• “What makes it better or worse?”

• “How is this impacting your mental health or daily functioning?”

• “What’s worked for you in the past?”

You’ll uncover root issues much faster.

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7. Set Shared Expectations for Follow-Up

Patients with chronic illness often fear abandonment or dismissal.

Say:

• “This is a long-term condition. I’m not going anywhere. Let’s create a care plan that adapts over time.”

Build ongoing follow-up structures, even if visits are brief or spaced out.

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What to Avoid

Avoid common phrases that harm even when unintended:

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Resources for Better EDS Communication

• Project ECHO for EDS & HSD Providers
  Monthly virtual case-based learning and deeper training models:
  https://www.ehlers-danlos.com/echo

• Book: Holding It All Together When You’re Hypermobile (Christie Cox)
  Includes patient insight on the healthcare experience
  https://www.holdingitalltogetherbook.com
  

Your words may be the difference between a patient who gives up—and one who tries again. With better communication, even the most complex cases become less overwhelming. EDS patients don’t expect perfection. They’re just hoping to be seen.

Listen. Validate. Collaborate. That’s medicine at its most human.