What EDS Patients Wish You Knew: A Message to Clinicians

Ehlers-Danlos syndrome (EDS) is a complex, often misunderstood condition, and for many patients, the hardest part isn’t the symptoms. It’s the years of being dismissed, misdiagnosed, or simply not believed.

At Ladyspinedoc, we believe medicine is about connection and that healing begins when patients feel seen, heard, and safe. This special collaboration post in honor of Chronic Disease Awareness Month features a powerful message from a youth health advocate and first-year medical science student living with EDS. Her goal? Help healthcare providers, especially those early in their careers, better understand how to support patients with EDS.

Her insights are genuine, raw, and educational – and they serve as a reminder that empathy is one of the most essential tools in a clinician’s toolbox. We’ve also included reflections from Dr. Betsy Grunch, board-certified neurosurgeon, on how providers can deliver more supportive, affirming care to patients navigating conditions like EDS.

From a Youth Health Advocate Living with EDS

(Shared Anonymously)

What do EDS patients like me wish health care professionals knew? I’d love for providers to understand the gravity of misdiagnosis. Delayed diagnosis doesn’t just waste time; it erodes trust. It can take years, even decades, for people with EDS to be heard and believed.

Most “zebras” have had their voices diminished, overpowered by healthcare professionals. Our experiences are often denied. Know that your words are powerful. What you say and how you say it matter.

Please keep an open mind and take a moment to listen. People know their bodies best. Every patient has a story.

What I Wish You Knew:

There are things about living with EDS that aren’t always visible, but they affect every part of how we move through the world and interact with care providers.

• People with EDS are constantly uncomfortable. We fidget, shift, and move mostly because our joints are unstable, not always because we’re anxious.
• Fidgeting shouldn’t be used as a mental health indicator.
• Many of us experience appointment-induced anxiety after years of dismissal and medical gaslighting.
• Chronic pain changes how we experience and express pain. It doesn’t always appear as textbooks describe it.
• Many tests may come back “normal,” but that doesn’t mean nothing is wrong. For EDS, very specific tests need to be ordered, and conditions that are rare in the general population can actually be more common in people with EDS.

Brain fog is real. It can make it difficult to remember details, think clearly, speak up, or advocate for ourselves during appointments. Having a support person can help communicate on our behalf—please don’t shut us or them down. Instead, encourage and support us.

Common Misconceptions About EDS:

Beyond the day-to-day challenges, many harmful myths about EDS still persist, including these:

• “There’s no treatment, so diagnosis isn’t important.”
• “EDS is just flexible joints and stretchy skin.”
• “Hypermobility spectrum disorder is less severe than EDS.”
• “EDS patients can’t have tight joints.”
• “Ribs can’t subluxate.”

These misconceptions not only delay diagnosis but also dismiss the very real pain, complexity, and validity of EDS patients’ experiences.

Don’t Overlook Neurodivergence:

People with EDS are five times more likely to have ADHD. That means:

• We may struggle to identify or explain pain
• We might stim, mask, or fidget as a coping mechanism
• We need clinicians who practice neurodivergent-affirming care

You don’t have to have all the answers to make a difference. Please just show us you’re listening and willing to learn. That’s a powerful place to start.

How Providers Can Better Support EDS Patients

By Dr. Betsy Grunch, Board-Certified Neurosurgeon

EDS is a condition that requires nuance, patience, and collaboration. No two patients are exactly alike. Some are incredibly flexible. Others feel stiff and painful in every joint. It’s a spectrum, and it's rarely simple.

One of the most powerful things a clinician can do is acknowledge a patient’s experience. If someone tells you they’ve been in pain for years, believe them. If they tell you their joints subluxate (partially dislocate), don’t dismiss it because it’s unusual. Our job is to listen, not label someone as “too complex” or “dramatic.”

How I Approach EDS Care:

• Validate their story. Most EDS patients have fought hard to get a diagnosis. Trust them and recognize the strength it takes to be a Bendy Baddie in a healthcare system that doesn’t always listen.
• Think collaboratively. EDS care often requires a team: physical therapists, rheumatologists, neurologists, and more.
  
• Acknowledge comorbidities. Conditions like POTS (Postural Orthostatic Tachycardia Syndrome), MCAS (Mast Cell Activation Syndrome), and ADHD (Attention-Deficit/Hyperactivity Disorder) are common in the EDS community.
  
• Offer hope. There may not be a cure, but there is treatment, and validation is the first step in that care.

EDS patients are some of the strongest, most self-aware people I’ve met. We owe them better care and a better healthcare culture.

Final Thoughts

July is Chronic Disease Awareness Month, a time to recognize the millions of people living with long-term health conditions like EDS. When it comes to rare and complex diagnoses, compassion is a cornerstone of clinical excellence.

If you’re a healthcare provider, especially early in your career, know this: you don’t need to be an expert to make a patient feel safe. You just need to listen deeply, stay curious, and lead with empathy.

Let’s build a future where EDS patients are heard, respected, and believed, and where being “Chronic But Iconic” is seen for what it truly is: resilient, real, and worthy of better care.