Tips for Traveling with hEDS

By: Gina Romero, LICSW, LCSW, and fellow zebra

Practical strategies for managing hypermobility and chronic illness while on the go.

Traveling with hypermobile Ehlers-Danlos syndrome (hEDS) comes with a unique set of challenges. For people living with chronic joint pain, fatigue, and the unpredictability of an invisible disability, travel can feel physically overwhelming. In this post, you’ll learn how to travel comfortably, without less pain and less potential for flare-ups.

1. Choose a Seat That Supports Your Body

A very important chronic illness travel tip is to choose your seat strategically. While most people fight for the aisle, a middle seat in an empty row can be a surprising win for hypermobility. It gives your limbs room to relax outward and shift positions frequently, which can reduce tension and prevent subluxations.

If available:

• Pick bulkhead or exit row seats for extra legroom so you can stretch out

• Opt for window seats when you need support to lean against

• Take advantage of pre-boarding to take your time getting settled. Remember: you don’t have to have a wheelchair to need extra assistance.

Small choices like seat selection can make a big impact when you’re living with an invisible disability that others might not recognize.

2. Pack Travel Pillows and Portable Supports

If you’re dealing with chronic pain or joint instability, the standard seats on planes and trains won’t cut it. Bring tools that help your body maintain proper alignment.

Try packing:

• A lumbar support pillow to keep your spine neutral. You can get inexpensive lumbar support pillows from many airport travel stores, and you can also find cheaper alternatives online

• A supportive neck pillow to reduce head and neck strain. Again, you can find both fancy and cheap alternatives in many places.

These adjustments are subtle but can make a difference in comfort for those traveling with hEDS or other invisible illnesses.

3. Use Braces and Compression Gear for Joint Support

When you’re navigating airports or long layovers, joint support is essential. Many people with hEDS benefit from wearing compression garments or braces during travel to reduce fatigue and stabilize joints. I personally travel with compression socks.

Don’t forget to pack:

• Knee or ankle braces

• Wrist or thumb splints if you’re handling bags

• Compression socks or leggings (especially if you also have POTS or dysautonomia)

These tools that support your body and help prevent injury or pain flare-ups. Including these supportive tools is a must for chronic illness tips for longer travel days.

4. Stretch and Move Often to Prevent Stiffness

Staying still for long periods can lead to muscle tightness, joint locking, and increased discomfort. If you're living with hEDS, you know that even short periods of immobility can increase your chances of injury, strain, etc.

Here are some suggestions for keeping your body moving when traveling:

• Do the PT exercises that you’ve forgotten about. (Yes, I forget to do mine, as well). This might include: seated ankle circles and shoulder rolls

• Take short standing breaks in the aisle or at rest stops

• Stretch calves, hamstrings, and neck muscles when possible.

• ** Just remember not to stretch more than you typically do!
  

  Regular movement are one of the simplest but effective chronic illness travel strategies.

  5. Choose Lightweight, Accessible Luggage

  The wrong luggage can easily cause injury or flare-ups. If you live with joint instability or fatigue, opt for tools that make movement easier and reduce strain.

  Look for:

• A lightweight rolling suitcase with spinner wheels

• A crossbody or rolling personal bag to avoid shoulder strain

• Padded straps and easy-grab handles for minimal twisting

• Don’t forget that you can also check your luggage for easier travel within the airport. Many airlines offer to check your carry-on for free, I I encourage you to take advantage of this!

  Accessible luggage helps keep travel doable when you’re managing an invisible disability that most people can’t see, but that still impacts your daily function.

  6. Prepare for Sensory Overload

  Many people living with hEDS also experience sensory sensitivities or co-occurring conditions like autonomic dysfunction, which can make loud, crowded, or bright environments incredibly taxing.

  To protect your nervous system:

• Use noise-canceling headphones or earplugs. My personal favorite earplugs: Loop.

• Keep a grounding object like, gum, or a grounding bracelet handy. If we work together in therapy, be sure to ask me to make a grounding bracelet during a session!

• Sit at an empty gate. It’s likely to be quieter if you sit at an empty gate until you need to board your plane

• Avoid sitting near restaurants (to reduce sensory overload from smell) when possible
  

• These small accommodations can make a big difference for people traveling with an invisible illness.

  7. Build Recovery Time Into Your Trip

  The reality of living with a chronic illness is that you might not bounce back from travel the way others do.

  To support your well-being:

• Avoid over-scheduling your first day when possible. If you have extra vacation time to burn, consider adding in a “rest day” on the day following your travel

• Allow rest breaks between excursions or appointments

• Choose lodging with comfort-enhancing amenities like a tub

• Don’t underestimate the importance of a comfy chair or couch! When choosing lodging, don’t forget to choose a place with a comfortable chair. This may sound silly, but I’ve stayed at a few Air BnBs that didn’t have a single comfortable place to sit an relax.
  

  Plan your trip with energy conservation in mind.

  
  8. Hydrate, Fuel, and Track Medications

  Managing hEDS symptoms while traveling often means staying ahead of hydration and nourishment. Dehydration and low blood sugar can easily trigger fatigue, dizziness, and pain.

  Here’s what to prep:

  • A refillable water bottle and salty snacks

  • Electrolyte tablets or drinks

  • All necessary medications in your carry-on (never checked bags), and extra if you’ve packed them into a pill box

  • A printed or digital list of medications and dosages in case of emergency

9. Honor Your Limits—Even If No One Else Sees Them

Invisible disabilities can be hard to advocate for, especially in fast-paced or ableist environments. But knowing your limits and planning around them is an essential skill for anyone living with hEDS.

You are allowed to:

• Use mobility aids

• Say “no” to plans that push you past your limit

• Rest without apologizing

• Ask for accommodations, even if you “look fine”

You don’t have to explain your pain to justify your care.

You Deserve to Travel Comfortably

Traveling with hEDS doesn’t have to mean pushing through unbearable pain. With the right preparation and pacing, your next trip can be far more enjoyable. By listening to your body, setting boundaries, and planning ahead, you can explore the world on your terms.