Zebra Seeking Spoons

“You look fine.”

“You’re just anxious.”

“Everyone is tired.”

“Maybe it’s all stress.”

If you live with Ehlers-Danlos Syndrome (EDS), there’s a good chance you’ve heard one—or many—of these phrases.

For many of us, getting an EDS diagnosis isn’t just a medical journey. It’s a journey of constantly having to prove that our pain is real. Before a diagnosis, and sometimes even after, many people with EDS spend years feeling unheard, dismissed, or questioned by the very people they turn to for help.

That experience has a name that many patients recognize: medical gaslighting.

What Is Medical Gaslighting?

Medical gaslighting occurs when a healthcare provider dismisses, minimizes, or incorrectly attributes a patient’s symptoms in a way that causes the patient to question their own experiences or reality.

Sometimes this is intentional, but often it isn’t.

A provider may lack education about EDS, rely on outdated information, or make assumptions based on appearance, age, or normal-looking test results. Regardless of the reason, the impact on the patient can be profound.

Medical gaslighting can sound like:

• “Your tests are normal, so nothing is wrong.”
• “You’re too young to be in this much pain.”
• “It’s probably anxiety.”
• “Everyone gets dizzy sometimes.”
• “You’re just deconditioned.”
• “You spend too much time researching your symptoms.”

Over time, hearing these messages can make you wonder if you’re exaggerating.

You’re not.

Why Is It So Common in EDS?

Ehlers-Danlos Syndrome is often called an “invisible illness.”

Many symptoms can’t be seen from the outside:

• Chronic pain
• Joint instability
• Fatigue
• Frequent injuries
• Autonomic dysfunction
• Gastrointestinal problems
• Headaches
• Brain fog

Many imaging studies and routine blood tests may also appear normal.

When providers aren’t familiar with connective tissue disorders, they may incorrectly assume that normal test results mean there is no illness.

The reality is that normal tests do not always mean a healthy body.

The Emotional Cost

Medical gaslighting doesn’t just delay diagnosis.

It can leave lasting emotional wounds.

You may begin to:

• Doubt yourself.
• Delay seeking care.
• Downplay serious symptoms.
• Feel ashamed of asking for help.
• Believe you’re “too much.”
• Stop trusting your own body.

For many people with EDS, the emotional scars of dismissal last long after the appointment ends.

How to Respond When You Feel Gaslit

You cannot control another person’s response.

But you can advocate for yourself with confidence and clarity.

1. Stay Grounded in Your Experience

Your symptoms are real because you are experiencing them.

You don’t need someone else’s belief to make your pain legitimate.

2. Ask Questions Instead of Arguing

If a provider dismisses your concerns, try asking:

• “Can you explain what led you to that conclusion?”
• “What else could explain these symptoms?”
• “If this isn’t EDS-related, what would you recommend we investigate?”
• “What symptoms would concern you enough to pursue further testing?”

Questions encourage discussion rather than confrontation.

3. Ask for Documentation

If a provider declines testing, imaging, or a referral, you can calmly say:

“Could you please document in my chart that I requested this evaluation and that it was declined, along with your reasoning?”

Sometimes this prompts a more thoughtful discussion. Even when it doesn’t, it creates a clear record of your concerns and the clinical decision.

4. Bring Information

Bring:

• A written symptom timeline
• A medication list
• Photos or videos of visible symptoms when relevant
• Questions written ahead of time

Keeping information organized can help make appointments more productive and ensure your concerns are addressed.

5. Bring Someone With You

A trusted friend or family member can:

• Take notes
• Help remember information
• Offer emotional support
• Reinforce what you’ve shared

Advocacy is easier when you don’t have to do it alone.

6. It’s Okay to Seek Another Opinion

Not every provider is the right fit.

If you consistently feel dismissed, unheard, or disrespected, seeking another clinician isn’t being difficult.

It’s advocating for your health.

Protecting Your Mental Health

Repeated dismissal can make every future appointment feel frightening.

After difficult visits, remind yourself:

• Your pain is real.
• Your symptoms deserve evaluation.
• One provider’s opinion is not the final word.
• You know your body better than anyone else lives in it.

Finding providers who listen can make an enormous difference—not only in your medical care but also in rebuilding trust in the healthcare system.

A Final Thought

One of the hardest parts of living with Ehlers-Danlos Syndrome isn’t always the pain itself.

Sometimes it’s carrying the burden of proving that the pain exists.

If you’ve ever left an appointment wondering whether you imagined your symptoms, know this:

You are the expert on what it feels like to live in your body.

The right healthcare provider won’t expect you to convince them that you’re suffering.

They’ll work alongside you to understand why—and help you find the best path forward.

Until then, keep trusting yourself.

Your voice matters.

And your story deserves to be heard.