Travelling with Ehlers Danlos Syndrome

CAIRO - 6 August 2017: We all know that travelling with a disability can be tricky, but by no means impossible. Here, Helen York, who has Ehlers Danlos Syndrome, which gives a person chronic pain, shares her top tips on preparing for a trip and making sure it goes smoothly.

When I told people I was going to Cambodia, I got a lot of quizzical looks and people asking; “how the hell are you going to cope?” Some of it is bloody minded stubbornness, but a lot of it is planning and preparing.


Travelling with Ehlers Danlos Syndrome –via Disability Horizons

What to do before a trip

1. If you’re going on a tour, make sure you let them know about your condition, any concerns, health and safety risks and your limitations. They need to know so they can plan accordingly. They may also require a health check from your GP.

2. Get insurance. Everyone should travel with health insurance, but if you have a chronic pain condition it is essential. I use a UK company called Fish, which is expensive but is OK with me being broken.

I can also declare all my conditions online without having to ring anyone. I’ve also used Age UK, which is very similar to Fish and you don’t need to be a certain age to use them.

3. Get a super lightweight bag that can be carried in lots of different ways – wheels, rucksac and waist/shoulder strap. My bag is an Osprey one and has wheels and a proper rucksack back, complete with waist strap, which makes all the difference to me.
It also has a day pack, which zips onto the main bag and is all incredibly light weight. It also opens along the length, unlike a rucksack where you open at the top, so there is less rummaging around in your bag and accidentally dislocating your finger whilst you search for clean underwear. It was expensive, but mine was half price in the sales and has been well worth the investment.

4. Make sure you have enough of your medication and pack it in your hand luggage. You might need a DRs letter depending on where you’re going and what meds you’re on.

Don’t change meds last minute – I did and it added to the stress! Again, depending on the country and your meds, you may need a license to enter. For Cambodia and Thailand, I needed documentation from the Thai and Cambodia government to take in morphine. Allow plenty of time for sorting this out before you go. The appropriate embassy is the best place to start for advice about this.

5. Pack slowly over a few weeks. Don’t try and cram it all in in one day, slowly put a list together and tick things off as you add them. No point in starting a flare up before you’ve left the house.

6. On a similar note, plan rest before your holiday. When I went to Cambodia, I set aside the two weekends before for rest and this made a huge difference to my pain and energy levels.

7. Contact the airline to let them know about any food restrictions and ask for wheelchair support. I found this assistance amazing. If you ask for it, you’ll get pushed from check in to the plane then onto the next plane or to the taxi rank. It may feel embarrassing or you may be reluctant to ask for help, but why waste your precious energy and walking ability to go round an airport – save it for going round the coliseum etc.

Also having wheelchair assistance means you don’t have to carry your bag. My shoulders and hands hurt less because I was able to put my bag on my knee (which is heavy because it’s filled with meds). At the airport, once I reached my airline I had help with my bags, I bypassed the queues and they bought the wheelchair to me instead of asking me to walk back to the assistance people.

8. Similarly, you should contact the train station if you haven’t got anyone to help you get on and off the train. Having some visible sign of a disability seems to help as well.

This year I was travelling with knee splints and a crutch (my other splints are mostly hidden) and I’ve had far more help. There have been idiots as well, but the kindness of strangers has been great. I had people helping me to get my bags on and off the train, offering to put things in the overhead racks. The station staff let my friend through to help when I was struggling with my bag.


Travelling with Ehlers Danlos Synd1rome –via Disability Horizons

During your trip

1. Take a blanket and a pillow, it will vastly improve your flight. Yes, long haul flights provide blankets, but they aren’t warm and they won’t help in the airports.

A blanket can be used to make airport seats more comfy, less cold etc. A blanket also helps hotel beds become a bit more comfortable – lay it under the sheet or use it as a pillow. If you’re travelling between places, use your blanket or bag as a footrest if you’re short, keeping feet and knees supported will help comfort and pain.

2. Wear comfortable clothing to fly in, including shoes you can slip off easily so when you’re on a cramped plane, you can kick them off and push them under the seat.

3. Take heatpacks, tubigrip, spare splints, whatever it is that helps a bit with pain as it all adds up. Safety pins are very useful too – things happen unexpectedly, such as splints or clothes breaking, which safety pins can fix.

4. Take a bear, some things will be tough and you’ll need a hand to get yourself up and going again.

5. My tablet was really helpful. I loaded it up with TV programmes and audio books and I wrote my holiday diary on it too. I also took the odd photo on it. It’s also really useful if you need emergency info about something most places have WiFi somewhere.

And on that note, it’s worth taking a Kindle. Do not, I repeat do not, waste precious spoons (not heard of the spoon theory? Check it out) on carrying books around.

5. Readjust your expectations – you will not be able to go everywhere and do everything in your destination. Pick and choose carefully.

One of my favourite days when I went to Bali was slowly walking to the art museum, slowly pottering around the beautiful gardens it was in and then having a coffee. This was followed by lunch in a local cafe with a seat by the street so I could soak up the sense of the place and people watch. Then I headed back to the hotel via the market and had a nap whilst it rained outside.

It was a lovely relaxed day and I did what I wanted to do on my schedule, making use of the weather, so I didn’t feel like I was missing out. When I met up with the rest of my tour group, they had all got drenched in the downpour leaving them a bit miserable, so I definitely got the best out of the day!

6. You know your pace but I find it helps to go with realistic expectations. I know I can’t join in evening activities and daytime things, so I choose day time because that’s more important to me. This does mean I had more room service food and less time with the rest of my tour group. But at the end of the day, my limits are different to a lot of peoples and I can’t keep up. I have to choose what’s important to me.

7. Similarly, don’t rush round doing everything as soon as you get there – you will crash. Instead, head to your hotel and relax, sleep, whatever for a while.

8. The issue of toilets…. The time in Cambodia where I was wearing a long skirt, had my crutch, had awful leg pain and had the toilet was a just hole in the ground… Ah that was a challenge! Depending on where you go toilets may squatting ones or literally a hole in the ground. Think before about how you can cope.

9. Postcards – if this is stressful or painful, don’t send them, or only send a few. You could email a photo instead. Don’t feel obliged to ruin your holiday to keep friends and relatives happy.

10. I wore UV arm covers to put over my splints, bought from eBay. When I’m in the UK I wear cotton or wool arm warmers, partly to hide the splints and partly because the velcro sticks to everything and irritates me.

11. If massages help. treat yourself, you’re on holiday after all!

After your holiday

1. Plan time to rest after your holiday. If you work, book a few extra days off, you will benefit hugely from it. Again, I book out a couple of rest weekends after I’ve been on a long trip, or, if it’s a short trip, just the one weekend.

2. If you’ve taken photos blow them up and put them near your bed or sofa so when pain gets you down so you can look at them. Make sure there are reminders of the trip.

Final words of advice… enjoy yourself!

By Helen York; this article was originally published by Disability Horizons