How to Make the Medical Community Take Ehlers-Danlos Pain More Seriously

Living with Ehlers-Danlos Syndrome (EDS) often means enduring relentless, misunderstood pain. For many patients, the struggle isn’t just with the condition itself, but with getting healthcare providers to take their pain seriously. It can feel like an uphill battle, but you’re not alone—and there are ways to advocate effectively for better care and understanding.

If you've experienced dismissive doctors, misunderstood symptoms, or a lack of validation, this blog is for you. We'll explore the systemic issues in pain management for EDS patients and provide actionable steps to empower you in advocating for the care and acknowledgment you deserve.

Why Is Pain from EDS Often Dismissed?

Before we can address how to change this, we need to understand why it happens. Unfortunately, EDS pain frequently gets overlooked for a variety of reasons:

1. A lack of awareness within the medical community  

   EDS is considered a rare condition, though it may be underdiagnosed. Many healthcare providers have limited or outdated knowledge about its symptoms and complications, particularly chronic pain.

2. Biases in pain management  

   Chronic pain, especially in conditions like EDS, often isn’t visible or measurable with standard medical tools. This invisibility can lead to the false assumption that patients are “exaggerating” their pain.

3. The complexity of EDS symptoms  

   With EDS affecting connective tissues throughout the body, symptoms can vary greatly, making it difficult for doctors to identify patterns or pinpoint a clear cause for the pain.

4. Healthcare system constraints  

   Limited appointment times and fragmented care models don’t lend themselves to managing complex conditions like EDS. Pain management can often take a back seat to more immediate medical concerns.

Recognizing these systemic barriers is the first step toward addressing them—but it’s also important to explore how you, as a patient, can initiate change.

Strategies to Advocate for Your Pain to Be Taken Seriously

Advocacy starts with preparation, persistence, and strategy. Here are concrete steps you can take to proactively address pain dismissals and push for the care you require.

1. Educate Yourself About EDS Pain

Knowledge is power. When you fully understand the nature of EDS-related pain, you’ll be better equipped to articulate your experiences. Research reputable sources like the Ehlers-Danlos Society, peer-reviewed medical journals, and patient forums to gather information about:

• The types of pain EDS causes (e.g., joint pain, nerve pain, headaches)

• Evidence-based pain management strategies

• How EDS pain differs from other chronic conditions

When speaking with your doctor, referencing specific studies or medical guidelines about EDS pain lends credibility to what you’re sharing. It signals that you’ve done your homework and that your symptoms align with documented patterns.

2. Keep a Pain Journal

Documentation is a powerful tool in healthcare advocacy. A detailed pain journal can help paint a clear picture of what you experience daily. Note the following regularly:

• Pain location and severity (use a 1-10 scale)

• Triggers that worsen or alleviate the pain

• Associated symptoms (e.g., fatigue, dizziness, or joint dislocations)

• How the pain impacts your quality of life

• Medications or interventions you’ve tried, and their effectiveness

When presented to a doctor, this concrete, organized data can prevent your narrative from being dismissed as subjective or overly generalized.

3. Find the Right Medical Team

Not every doctor will have the expertise—or willingness—to treat EDS-related pain appropriately. Prioritize medical practitioners with:

• Experience treating connective tissue disorders or chronic pain

• Empathy and active listening skills

• A collaborative approach to care

If your current doctor doesn’t meet these criteria, don’t be afraid to seek a second (or third) opinion. Look for specialists like rheumatologists, geneticists, or pain management experts who understand EDS nuances. Online support groups can often offer recommendations.

4. Know How to Communicate Effectively

The way you approach conversations with your doctor can significantly impact the outcome. Here are some tips for improving communication:

• Be clear, concise, and specific when describing symptoms. Avoid vague statements like “It hurts all the time” in favor of detailed descriptions like, “I constantly experience sharp, stabbing pains in my knees after 15 minutes of walking.”

• Stick to the facts and avoid emotional appeals that might unintentionally reinforce negative biases (e.g., being labeled "hysterical").

• Ask open-ended questions like, “What diagnostic tests could help us better understand the pain I'm experiencing?” or “What options exist for managing EDS-related pain?”

5. Bring a Support System

Never underestimate the power of having an advocate by your side. A trusted family member, friend, or patient advocate can attend appointments with you to:

• Take notes

• Provide additional context for your symptoms (from an outside perspective)

• Reinforce your credibility

Advocates can also ensure you remain assertive and focused if the conversation becomes frustrating or unproductive.

6. Utilize Other Advocacy Channels

Unfortunately, improving your care isn't always limited to what happens in your doctor’s office. Sometimes, systemic change is necessary. Consider these broader advocacy steps:

• Participate in awareness campaigns led by organizations like the Ehlers-Danlos Society to spread knowledge about the condition.

• Share your experiences online via social media, blogs, or forums to connect with others who’ve faced similar struggles.

• Lobby with patient advocacy groups for expanded EDS research funding, updated medical guidelines, and better provider education on chronic pain.

Remember, the collective power of the EDS community cannot be underestimated. Every voice matters.

Pain Validation Isn’t Just a Medical Issue—It’s a Human Rights Issue

If you’re feeling frustrated, you’re absolutely justified. Pain dismissals don’t just affect your physical health—they can take a severe toll on your mental and emotional well-being. Being told your pain isn’t real or doesn’t matter is a form of medical gaslighting, and it’s not okay.

But progress is being made. The more patients advocate, the more forward-thinking practitioners are beginning to recognize the need for systemic change in pain management.

Take Control of Your Pain Journey

You deserve to have your pain taken seriously. By educating yourself, documenting your experiences, advocating effectively, and seeking out supportive medical professionals, you can begin shifting the narrative in your healthcare encounters—and beyond.

To connect with a broader EDS community or discover more resources, visit supportive organizations like the Ehlers-Danlos Society or consider joining local patient groups. Know that you’re never alone in this fight.

Together, we can work toward a future where every EDS patient receives the care, empathy, and validation they deserve.