Supporting an Adult with hEDS: A Caregiver’s Guide

If you’re supporting someone with hypermobile Ehlers-Danlos syndrome (hEDS), your role matters. You’re likely not managing medications or making medical decisions, but you are one of the most important sources of emotional strength, psychological safety, and practical partnership. Whether you’re a partner, sibling, parent, or close friend, the person you care about is still primarily responsible for their own health—but that doesn’t mean they can or should navigate this complex condition alone. This guide will help you understand how to be an effective caregiver without overstepping, while protecting your own health and well-being along the way.

What You Should Know About hEDS (and Why It Matters to You)

hEDS is a multisystemic connective tissue disorder. It’s most often associated with

• Chronic joint pain

• Joint instability, dislocations, or subluxations

• Fatigue and muscle weakness

• Sensitive or fragile skin and soft tissue injuries

• Dizziness, fainting, or rapid heartbeat (often due to postural orthostatic tachycardia syndrome, or POTS)

• Allergic-type symptoms (sometimes related to mast cell activation syndrome, or MCAS)

• Digestive issues, bladder/pelvic pain, and temperature regulation problems

• Anxiety, depression, PTSD, disordered eating, and other mental health challenges

Even though the person you’re supporting likely manages most of this on their own, you’ll be more helpful—and more calm in emergencies—if you understand the basics of their condition.

In Case of Emergency

• Know what POTS is: Postural Orthostatic Tachycardia Syndrome causes rapid heartbeat, dizziness, or fainting when standing. (See separate Information page)

• Know what medications or devices they rely on: braces, splints, antihistamines for MCAS, pain management strategies.

• Keep a copy of their key medical information, allergies, and emergency contacts—with their consent.

  
  

Your Core Role: Emotional and Psychological Support

People with hEDS often face disbelief or dismissal from medical professionals, family members, or employers. Your consistent support is a lifeline. Here's how you can help

• Believe them. Validate their symptoms without trying to fix them. “I believe you” can be more powerful than any solution.

• Build trust. Be consistent and open. Let them take the lead in describing their needs and boundaries.

• Support their autonomy. Don’t over-help. Respect their expertise in their own body.

• Offer help—but don’t insist. Say, “Would it help if I drove you to this appointment?” not “You shouldn’t be doing that.”

• Encourage psychological support. Whether it’s therapy (like CBT or ACT), mindfulness, or support groups, these tools make a real difference.

• Normalize ups and downs. Pain flares, fatigue, and emotional dips are part of life with hEDS. You can’t prevent them, but you can ride them out together.

What You Might Be Asked to Do (Sometimes)

Even though you’re not a full-time caregiver, you may be needed for

• Transportation to appointments or physical therapy

• Help during “flare days” when symptoms spike

• Assisting with household tasks, shopping, or errands when pain or fatigue are high

• Listening and processing hard medical news or decisions

Be flexible, but also clear about your own capacity. Offer help when you can, and communicate openly when you can’t.

What You Need to Stay Healthy and Present

Caring for someone with a chronic condition can be emotionally taxing—even when you love them deeply. These strategies protect you so you can be the best support possible

• Know your boundaries

  • It’s not your job to fix everything.

  • You can support without sacrificing your identity or well-being.

• Watch for signs of burnout

  • Watch for emotional fatigue, resentment, helplessness, irritability, sleep issues

  • Assess your well-being with tools such as the Zarit Burden Interview or AMA’s Caregiver Self-Assessment Questionnaire to check in with yourself

• Stay connected

  • Maintain your friendships, hobbies, and goals

  • Join a support group

• Get informed

  • Learn about hEDS from reliable sources so you feel more confident

  • Check out caregiver-specific programs such as the one offered by the National Council on Aging

• Ask for help

  • You’re part of the care team, not the whole team

  • Ask for respite care, involve other friends/family, or seek counseling if needed

Integrating into the Bigger Picture

If the person you’re supporting is comfortable, you can be part of their care team by

• Attending care planning sessions or appointments (when invited)

• Coordinating communication among specialists

• Helping track symptoms or flare patterns

• Encouraging follow-through on mental health and self-management plans

You don’t need to know everything—but knowing when to ask, who to call, and how to listen can make a big difference.

Summary

Being a caregiver to someone with hEDS is rarely about managing medications, coming up with solutions, or handling emergencies. It’s about being a trusted ally—someone who listens, believes, adapts, and encourages. Your care helps reduce the isolation, frustration, and overwhelm that often accompany chronic illness. But don’t forget: your well-being matters just as much. The most sustainable support comes from a place of balance, not burnout.

Helpful Resources

• The Ehlers-Danlos Society - Information about hEDS including online and in-person symposiums and other events.

• National Alliance for Caregiving – www.caregiving.org A hub of tools, reports, and advocacy for caregivers in the U.S., including support for caregivers of adults with chronic illness.

• Local Facebook Groups - Many cities have local EDS Facebook groups. Search on the name of your city and EDS.

• Mental Health and Mindfulness for Caregivers

  • Caregiver Action Network – Peer support and stress management tools

  • Insight Timer – Free app with guided meditations, including ones for caregiver burnout and chronic pain

Sources

Sources for this article include both condition-specific and general caregiving research articles.

• References specific to hEDS/HSD focus on diagnosis, management, psychological impacts, multidisciplinary care, and self-management—providing directly relevant context for caregiving in hEDS.

• Caregiving references examine caregiving roles, burden, mental health, interventions (e.g., Acceptance and Commitment Therapy, digital tools, expressive arts), cross-cultural perspectives, and systemic issues across a wide range of chronic medical conditions.