A Guide for Traveling with EDS & POTS

Estimated reading time: 6 minutesI do a fair amount of travelling. With an Italian husband, I often take short-haul flights to Italy. With my work, the flights tend to be long-haul, largely to the United States.  

I’ve learnt a few things about how to navigate my health and travel over the years. The Zebra Club community has also given me some great ideas for travelling with Ehlers-Danlos Syndrome and Postural Orthostatic Tachycardia Syndrome (POTS).

When I first started flying, I was so scared! I’ve moved on since my first long-haul flight to South Africa. I kept my shoes on and sat bolt upright the whole way!

Hopefully, this blog will share some useful tips for travelling with a chronic illness.

Navigating Airports and Flights with EDS & POTS

Airports can be overwhelming and triggering for many of us. The lights, noises, crowds, long lines (not great for POTS!), and don’t get me started on the duty-free perfume walk-through with MCAS! There are things we can do to help navigate it.

Tips for navigating the airport and boarding with EDS and POTS:

• It can be worth booking wheelchair assistance ahead of your trip if you have POTS or mobility challenges, so you can preserve your energy for the trip itself.
  • This can help you avoid standing in lines. This can usually be done through the airline when booking your ticket.
• It might be helpful to walk around a bit when waiting for your flight to keep the blood pumping and prevent blood pooling before you are even on the plane.
• You may be able to preboard early to prevent standing in the boarding line and have extra time getting settled.
  • You may have to explain, but sometimes you can just tell the gate agent you need to preboard for health reasons.
• Some airlines allow you to bring an “additional carry-on” for medical supplies and medications that don’t count towards your bag limit. It may be worth checking with your airline.
• Earplugs or noise-cancelling headphones may be beneficial if you experience sensory overload. You could use them in both the airport and on the plane.
• Do some movement snacks in the airport. Some of us like to find a quiet place to do some mindful movement snacks to get the fascia hydrated before boarding.

Tips for flying with Ehlers-Danlos and hypermobility:

• I travel with plenty of water & electrolytes. The cabin air has lower humidity and lower oxygen pressure, which can contribute to dehydration (1). Increasing fluid intake to account for the loss is a good idea for everyone, but probably even more important with POTS.
• Comfort is key: I like my neck cushion and comfortable, seam-free clothes. You may like a lumbar support, a larger pillow, or a squishmallow to support your arms.
• Light layers are a great idea. It can get cold in the air or hot if stuck on the runway.
• Request the seat you want when booking: I always request a window seat so I can rest my head against the cabin wall, but you may prefer an aisle seat so you can get up easily and move around.
• Keep moving to keep the fascia lubricated and prevent blood pooling. I do seated exercises like ankle circles and heel raises. Plus, I get up and do some gentle standing moves at the back of the plane.
• Bring lots of snacks if you have food sensitivities (and salty snacks if you have POTS!), you don’t want to be stuck without them on a delayed flight!

POTS & Flying

Flying can exacerbate POTS symptoms due to the cabin pressure, dehydration, and sitting still for a long time, leading to blood pooling. Not to mention the stress and nervous system activation that may come along with it.

There are things we can do to support ourselves.

Hydration before and during the flight is key, including electrolytes and/or salt. 

Compression socks and garments can also be helpful. A recent study showed full-length abdominal & leg compression is the most effective in reducing symptoms in a head-up tilt table. They found full length (abdominal, thigh, and low leg) was the best, followed by abdominal + thigh, then lower leg only compression (2).

The same group published a study this year testing commercially available compression tights and found they reduce heart rate and symptoms, both right away, and after several hours of use (3).

The Hidden Disabilities Sunflower Scheme

The hidden disabilities sunflower is a way to voluntarily share that you have a non-visible disability. According to the organization, many airlines and over 300 airports have trained their employees to support people with invisible disabilities and provide the sunflower lanyards.

They say, “Simply by wearing the Sunflower, you’re just letting everyone know that you might need extra help, understanding, or just more time.”

Sunflower lanyards are supposed to be free to access. You can find locations, and you can purchase them on the website if you are not near a location to pick up.

Road trips & EDS

Road trips can be quite stressful due to sitting still for long periods, motion sickness, sensory overwhelm, and more. There are some things we can do to help.

As a child, I suffered terrible travel sickness whenever I went in the car. It became a stressful event for me.

Travel sickness pills and my mum’s idea of sitting on a newspaper in the front seat seemed to help. And definitely no reading when travelling.

Thankfully, as an adult, this only happens now on long coach journeys. I’ve recently discovered acupressure wristbands, which can help alleviate symptoms. Apparently, travel sickness is commonly reported in people with EDS.

Tips for car rides with EDS:

• Plan regular breaks during long drives so you can stretch, walk about and breathe some fresh air.
• Keep moving while you are sitting in the car. Heel raises, pelvic tilts, gentle shoulder shrugs, and more to keep the blood from pooling and keep the fascia hydrated.
• Cushions and seat support can be helpful, supporting your arms or head as much as you need to feel comfortable and prevent bracing.
• I know a number of people who put a mattress in the back seats so they can lie down.
• Earplugs or noise-cancelling headphones can be helpful if there is a lot of road noise in your car.
• Compression garments may be helpful if you have POTS. Sitting for a long time can lead to blood pooling.

Planning and Pacing while on your trip

It can be tempting to do lots of things on vacation, but this can potentially lead to that boom and bust cycle we are all too familiar with.

Here are some ideas for pacing travel:

• Schedule a rest day or low low-key day after you arrive if you have a long day of travel to get to your destination
• Choose one meaningful activity a day. I always make time for an afternoon nap or rest. I’ve found it can be useful to let others know in your travel party that you do need to take time out to rest. This can help set expectations.
• Work in time for meditation or mindfulness. Even joyful moments can be full and stimulating, so it helps to pause now and then. This could just be taking some time to notice nature or the settings around you, and sitting and listening to birds, or noticing the details of a particular plant.
• Keep snacks around and stay hydrated. Some of us can struggle with low blood sugar, and there are often waits in tourist locations for restaurants. You may even want to get takeout and go eat your meal somewhere quiet and pretty.
• It may help to plan a day to rest after you get home from your trip before jumping back into your routine.

Building your travel toolkit

I’m sure we all have our travel toolkits. I know some members of The Zebra Club have suggested bringing a separate bag with their travel tools, pain relief supplies, braces, and supports. They are also the people to ask if you need ideas for your travel toolkit.

There’s no shame in packing heavier if there are tools that will help you stay comfortable and manage symptoms.

Here’s some of mine:

• Neck pillow
• Paracetamol
• Compression garments
• Seam-free, comfy clothes
• Earplugs, eye masks and sunglasses, and a hat.
• All my medications and supplements in one handy place
• Download audiobook prior to travel, plus a good book to read
• Water and electrolytes

What does your travel kit look like? Let us know in the comments!

Here’s a video I recorded after a long-haul flight, sharing tips and simple movement snacks to help you feel better while traveling. Save this one so you’re ready for your next trip!

FAQ

Can you fly with Ehlers-Danlos Syndrome?

Yes, many people with Ehlers-Danlos Syndrome (EDS) travel by plane regularly. While flying with EDS can present some challenges, such as joint pain, fatigue, or dysautonomia symptoms, there are several ways to make air travel more comfortable and accessible. With the right preparation and support, people with EDS can enjoy flying.

Can you travel if you have POTS?

Yes, many people with Postural Orthostatic Tachycardia Syndrome (POTS) are able to travel successfully. While travel can be more challenging depending on the severity of your symptoms, there are strategies that can help. Wearing compression garments, staying well-hydrated, and moving regularly to reduce blood pooling can make traveling with POTS more manageable and comfortable.

Can people with POTS go on a plane?

Yes, many people with Postural Orthostatic Tachycardia Syndrome (POTS) can fly safely with the right precautions. Air travel may trigger symptoms like dizziness, fatigue, or increased heart rate, but strategies such as wearing compression garments, staying well-hydrated, bringing salty snacks, and moving during the flight can help manage symptoms and make flying more comfortable.

Jeannie Di Bon

Jeannie Di Bon is a movement therapist, educator and author specializing in hypermobility, Ehlers-Danlos Syndrome and chronic pain. She is the founder of The Zebra Club app and the creator of the Integral Movement Method.