“Ehler-Danlos what?” It’s a question many patients with Ehlers-Danlos Syndrome (EDS) dread hearing every time they meet a new doctor. Battling a chronic and often invisible condition is hard enough, but having to educate medical professionals about its complexities adds an unnecessary layer of frustration.
For those with EDS, doctor visits often come with a mix of hope and hesitation. On one hand, a new doctor might bring fresh perspectives and solutions. On the other hand, there’s the sinking realization that you’re about to spend a significant portion of your appointment justifying your diagnosis, explaining your symptoms, and, yes, even pronouncing your condition correctly.
This blog explores the emotional toll of repeatedly explaining EDS to new doctors and why this burden shouldn’t fall entirely on patients.
What is Ehlers-Danlos Syndrome? A Quick Overview for Context
Before we get into the frustration of explaining this condition, here’s a brief explanation. Ehlers-Danlos Syndrome refers to a group of connective tissue disorders that affect collagen, a protein that provides strength and elasticity to the skin, joints, and blood vessel walls. Common symptoms include joint hypermobility, chronic pain, frequent dislocations, and fragile skin that bruises easily.
Sounds simple enough, right? Except, it’s not. EDS is a rare condition with varying subtypes (13, to be exact), each with its own set of challenges. It’s complex, difficult to diagnose, and largely misunderstood—even among healthcare professionals.
The Emotional Toll of Being Your Own Advocate
Starting From Zero Every Time
For many EDS patients, meeting a new doctor feels like hitting reset on a complex, years-long conversation. Instead of jumping into a discussion about potential treatments or symptom management, you often find yourself starting at square one.
You explain what Ehlers-Danlos Syndrome is, describe its impact on your body, detail the exhausting medical history that led to your diagnosis, and sometimes even pull out resources to back up your claims.
It’s draining. You’re already seeking help for a condition that limits your energy levels, yet you’re expected to be a walking, talking encyclopedia about it.
Why should the responsibility of education fall on the patient? Isn’t it reasonable to expect healthcare providers to be informed about rare conditions, or at the very least, to be willing to learn before dismissing your concerns?
The Weight of Being Dismissed
“Are you sure it’s not just anxiety?”
“It must be fibromyalgia or generalized joint pain.”
“I’ve never heard of that before, so it can’t be that serious.”
These are just some of the invalidating phrases EDS patients hear all too often. While some doctors are willing to listen and learn, others dismiss your symptoms outright or chalk them up to stress or exaggeration.
And every time it happens, it chips away at your confidence in seeking care.
Time is Never on Your Side
Medical appointments are notoriously brief. By the time you’re done explaining the basic facts of EDS and answering puzzled follow-ups, how much time is left to address why you’re there in the first place?
This creates a ripple effect. When appointments focus more on educating the doctor than tackling symptoms or treatments, it leaves critical medical concerns unanswered. The cycle of frustration continues, and patients are often left to grapple with worsening symptoms on their own.
Why Do Patients Have to Explain EDS Themselves?
EDS Awareness Is Growing, But Progress Is Slow
Over the years, organizations like The Ehlers-Danlos Society have done incredible work to raise awareness about this condition. Educational campaigns, webinars, and research papers are more accessible than ever. Yet, there’s still a significant gap in how much the medical community knows (or prioritizes) about EDS.
Part of the challenge lies in the rarity of the condition and the limited exposure most healthcare professionals have to it during their medical training. The result? A lack of baseline knowledge about EDS and its many manifestations.
Medical Bias and Systemic Issues
Unfortunately, medical bias plays a significant role in why EDS patients find themselves constantly explaining their condition.
EDS as “invisible”: Many symptoms, like pain and fatigue, don’t have outward signs that show up on routine tests or imaging.
Gender Bias: Statistics suggest a significant portion of EDS patients are women—demographic groups that are more likely to have their pain dismissed or minimized in medical settings.
Complexity Fatigue: Some doctors avoid confronting rare, complex conditions simply because they don’t have the resources or time to dig deeper. Quicker-to-spot diagnoses take priority.
How This Impacts Patients’ Mental Well-being
Burnout and Reluctance to Seek Care
Imagine knowing you need medical attention but avoiding it because the stress of explaining yourself feels worse than the symptoms you’re experiencing. This is a reality for many EDS patients.
Medical gaslighting and constant self-advocacy create a unique form of burnout, where the emotional toll of accessing care outweighs the potential benefits.
Strained Doctor-Patient Relationships
The best healthcare outcomes come from trust and collaboration between doctor and patient. When patients feel dismissed or misunderstood (especially repeatedly), that trust breaks down. It’s no surprise that many EDS patients resort to doctor-hopping, trying to find someone who will listen.
Solutions That Go Beyond Patient Advocacy
More Medical Training About Rare Conditions
One of the most effective ways to close the knowledge gap is to incorporate more training about rare conditions like EDS into medical curricula. Doctors shouldn’t be experts on every single medical condition, but they should have enough baseline knowledge to recognize, refer, and collaborate when presented with one.
EDS-Specific Resources for Doctors
Organizations like The Ehlers-Danlos Society have already created literature and webinars tailored for medical professionals. Patients can point their doctors to these resources, but imagine the impact if such materials were actively integrated into professional development initiatives across healthcare systems.
Creating Peer Communities for Knowledge Sharing
Healthcare peer networks can play a powerful role in improving patient care. Doctors with experience treating EDS can share their learnings, case studies, and successful treatment plans with colleagues through forums, conferences, or even digital platforms.
Finding Empowerment Amid the Frustration
Though the burden of explaining your condition shouldn’t fall on you, many EDS patients have found ways to reclaim their power in these interactions.
Come Prepared: Bring copies of medical records, diagnostic reports, and reputable EDS resources to appointments.
Practice Your Pitch: Develop a concise but thorough explanation of your condition that hits the key points quickly.
Build a Support System: Connect with fellow EDS patients or advocacy groups who understand your frustration and can offer tips for navigating the healthcare system.

You Are More Than Your Condition
Living with Ehlers-Danlos Syndrome is already challenging enough. You deserve medical professionals who understand your condition and meet you where you are—without making you prove the legitimacy of your pain.
While advocacy and education take time, know that organizations, researchers, and fellow patients are working tirelessly to raise awareness about EDS. Together, we can create a future where explaining EDS to a new doctor becomes less about frustration and more about collaboration.
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