Living Strong with EDS: Advice for Patients (and Their Care Teams)
May is EDS Awareness Month – and if there’s one thing I know for sure, it’s this: People living with Ehlers-Danlos Syndrome (EDS) are some of the toughest, most resilient humans on the planet. They’re not just flexible, they’re “Bendy Baddies.”
What is Ehlers-Danlos Syndrome?
For those unaware, Ehlers-Danlos Syndrome (EDS) is a group of inherited disorders that weaken the connective tissues in the body, particularly in the skin, joints, and blood vessels. Connective tissue acts like scaffolding, providing strength and support throughout the body. People with EDS often have super-flexible joints and stretchy, fragile skin, which can make healing (especially stitching wounds) much more challenging.
For those living with EDS, it can feel overwhelming, especially when the world around you doesn’t fully understand it. Whether you’re navigating it yourself or supporting someone who is, here’s what it takes to live strong, protect your health, and advocate wisely with Ehlers-Danlos Syndrome.
Build Your Dream Team for Ehlers-Danlos Syndrome
Thriving with EDS isn’t a solo mission; it’s a team effort. You'll need multiple healthcare providers who understand the complexities of connective tissue disorders and who take your symptoms seriously.
Look for:
- A supportive primary care provider
- Specialists like a rheumatologist, cardiologist, geneticist, and a neurosurgeon (especially if instability issues arise)
- A physical therapist experienced with hypermobility
- A mental health professional who can support the emotional side of chronic illness
Tip: If a doctor dismisses your concerns, you don’t have to "tough it out." Keep searching. You deserve providers who listen and advocate alongside you.
Protect Your Energy: It’s a Superpower for EDS Patients
Living with Ehlers-Danlos Syndrome often means your energy is different from others, but that doesn’t make it a weakness. With a little strategy and intention, you can conserve energy in ways that support your strength and independence. Here’s how:
- Prioritize what matters most
- Say “no” without guilt
- Use adaptive tools (like jar openers and reachers) and pacing techniques (like prioritizing tasks and taking regular breaks) to lighten your daily load
- Do not hustle through the hurt to prove your strength
Real Talk: In the world of EDS, less is often more. Remember that rest is not a sign of weakness, but a sign of resilience.
Advocate Like Your Life Depends on It
EDS patients often wait years (sometimes even decades) for a proper diagnosis. That’s unacceptable, and it’s why self-advocacy matters.
- Document your symptoms.
- Keep copies of imaging and specialist reports for future reference.
- Research reputable sources and be cautious of relying on “Dr. Google.”
- Bring a friend or advocate to major appointments.
Beyond personal advocacy, you can make an even bigger impact by educating others, sharing your story, and getting involved. Connect with support groups, volunteer with organizations like the Ehlers-Danlos Society or The Zebra Network, and use your voice on social media and in your community to raise awareness. Participating in events and contacting legislators can help drive change.
Key Takeaway: Every story shared, every conversation started, and every bit of advocacy and awareness brings us closer to a world where EDS is better understood and better supported.
Celebrate the Wins (Especially with EDS)
Walking without pain. Getting through a rough week. Finally hearing, “I believe you.”
Those victories deserve celebration. Life with EDS isn’t linear, it’s a series of hurdles and high-fives. Celebrate every single step forward, no matter how small it may seem. Progress is progress.
You’re Stronger Than You Know
If you’re living with EDS, know this: You are not alone. You are seen. And you are strong beyond words. This month (and every month), we’re celebrating YOU, the bendy baddies, the silent fighters, the badass survivors. Because being flexible isn’t the story. Being unstoppable is.
