How to travel with a chronic illness

When you’re ill all the time, the prospect of taking a holiday seems like a ridiculous idea. It’s another example of how living with a chronic illness can make our lives seem like the polar opposite of most people. A holiday is a no brainer for most, but to us the idea of a holiday is a awful lot of work. We start the mental list of worries and questions before we can picture the nice time we’ll have. That’s only natural.

Healthy people will take a holiday to escape and unwind, there’s no escaping that something simple like taking a holiday isn’t so simple for us. Illness makes us afraid to try new things, because we’re scared of the repercussions. We start to worry about the likely pain while we’re there, what the payback will be, now we’ll manage in a foreign country. We push it back to next month, next year “when we’re feeling better” and before we know it several years have gone by.

During our worst pain, a holiday is on the long list of things that fall to the side, while we simply wrangle to manage our lives day to day. It’s all very counter productive as the very reasons most people go on holiday are of course great for us too.

When you are ready to travel, I’ve got some advice to share with you.

Before you go

When is the best time to start travelling?

This is a very subjective question, but my simple answer is; when you can stomach the idea. Travelling requires a lot of energy, often a lot of walking, lifting, carrying and bending. There are some things you can do to mitigate this, but I’d recommend that to enjoy as much of your holiday as you can that you have enough stamina to manage an increase in your activity.

Do as much preparation as you dare

I like making lists, so I had two main lists for my holiday 1) things to sort of before I went and things to book for the trip and 2) things to pack. The beauty of this system is you don’t forget anything and if you’re like me you have backups of the lists synced to your phone and your computer so you have a backup plan incase anything is lost or forgotten. You can also then copy and reuse these lists for future holidays, making the amount of work you have to do
next time even smaller.

While you pack, prepare for any set of circumstances while you’re away. I pack light, but always make sure I have enough different types of clothes to cover me in case I get cold or hot.

Work out when you take your tablets

Crossing time zones can make it tricky to figure out when to take your regular medicines. I’d recommend speaking to your doctor for some advice here. However personally (again, before I flew) I worked out the times I would take my two regular tablets based on the times I took them in my home country.

Get holiday / medical insurance for while you’re away

You should declare your medical condition when you apply for the insurance. You may get asked some additional questions when you apply. For example with my endometriosis I got asked if I had been diagnosed by a consultant and if I had had any surgery to treat it. Disclosing a medical condition for insurance purposes will add a small premium to the cost of it, but it’s worth the extra peace of mind incase anything goes seriously wrong.

Make use of airport assistance

I dwelled on whether or not to use special assistance at the airport for weeks, and I’m glad I ended up doing it, I can’t recommend it enough. If you’ve not used it before special assistance is where airports or airlines provide help for people who are disabled or chronically ill to help them get around the airport and onto the flight (usually by buggy or wheelchair).

Airports require a great deal of walking (and a lot of standing and waiting) and you will generally spend a great deal of energy or invite a lot of pain by doing it on your own. I was in agony when I arrived at the airport for my departure, and could barely walk, but I found the special assistance desk and got pushed in a wheelchair through security, to departures and up to my plane. Doing this allowed me to save my precious energy in unnecessary walking and relieved me of avoidable pain. Then I could just relax on my flight and manage the pain until it went away. Crucially I could look forward to my holiday by saving some energy/pain.

Please enquire about it at your airport, and most airlines can automatically book you a place for special assistance onto connecting flights at other airports. Be prepared to be the last off the plane, or the first on, but trust me, it’s a lifesaver.

Travelling with medicines

Our airports require anyone leaving the UK with any liquids in their hand luggage (less than 100ml) to be in a resealable, transparent bag. I took to putting my medication in the same bag so if it was needed, my liquids/medications could be examined. I’d also recommend taking a letter from your doctor (there may be a small charge for this) about the medicine you are on and why it is required. Travelling with medicine or a TENS machine in your hand luggage should be absolutely fine, but I didn’t want to take any chances.

Try to avoid other illnesses while you’re away

Having a cold (or something similar) as well as my endometriosis is when I am most miserable. Do your best to avoid any other illnesses or bugs while you’re away. Drink bottled water (also avoid salads and ice). Take tablets to settle your stomach and help diarrhea. Pack plasters, and cream to relieve itches and burns (ideally one that can handle both), suncream and if applicable insect repellant. My two best friends while I was away were my sprays to defend against colds and my alcohol sanitizer for my hands.

Naturally you should speak to your doctor about any immunisations you might need or any boosters.

When you’re there

Don’t forget to pace your activity

This comes into it’s own when you’re on holiday, but you must pace the lead up to your holiday too. Getting as much rest as you can not just the the day before you fly but several days before. For example I started “rest for holiday mode” at least a week before I flew, gradually winding down the amount I did each day. I started to pack my suitcase a little bit at a time over a week rather than the night before, so I could avoid the exhaustion from a bit packing session.

It’s really important that even if you want to carry on with something while on holiday, but you can feel that you’re flagging that you stop before a problem starts and save the energy for another time when you’re more rested. You’ll get shorter periods of time doing what you enjoy on your trip, but you’ll have more time overall than if you push yourself for a whole day, then pay for it for two days.

Avoid the temptation to push yourself as much as possible so you do more with your holiday time. Or if you absolutely must (it’s your hard won holiday after all) leave yourself an adequate amount of time to recover from the payback.

Speak with the people around you

I’ve always advocated talking about your illness to others. I know while you’re away that you’ll probably want to forget all about illness for a bit, but it’s worth taking the time to explain that you have a long term illness to others travelling with you. Firstly, so they are prepared if you need assistance, but it will also help people to be mindful of the fact that you’re in pain or could be in pain, and will help set the pace with those you are travelling with.

We meet a lot of new people while we’re on holiday, and you should be prepared for more questions than usual about what’s wrong with you, why you’re in pain, and how you can look fine and be unwell.

Try not to let any silent judgements about your health spoil your trip. e.g. she was walking around just fine yesterday, and now she can’t do it. Only you know what your life is like and your threshold of pain. People who tend to dispute our experiences generally are strangers to pain themselves, that said most people will still be kind and understand.

Take proper time to rest, it will help with jet lag

I’d recommend grabbing moments to rest whenever you can. For example why stand at the train station when you can sit for a moment? I know that jet lag can make it hard to rest properly so do you best to relax and use my tips for managing chronic fatigue to help with it. Change your clocks/watch to your destination when you get on the plane, rest when that time zone would rest while flying, and when you get to your destination, eat your meals and take in as much sun during the day as you can to help your body adjust to the new time zone. Naturally, keep well hydrated too.

Establish a good holiday routine

I personally managed flying to Japan (nine hours ahead of the UK) by maintaining the routine I had back home, just in the new time zone. So holding on (staying awake) until a normal sort of bedtime hour for me, and getting up and going to bed at the same time will really help. Avoid the desire to lie in, but try to make the hour that you get up consistent. Showers straight after getting up will help with the initial grogginess. Always try to have some meals (especially breakfast) to give your body consistency, and the energy it needs to manage in a new country. Eating meals will help settle you into the pace of the holiday too as your stomach needs reminding of your time zone as much as your head does.

Have a backup plan, and expect set backs

When the pain does arrive don’t panic. Many people will tell you to think positively and that the pain won’t bother you while you’re away. (These are usually the people that are not troubled with pain). Of course the pain will make an appearance, the trick is to be ready for it. Always carry some emergency pain relief. (I have a handy key ring that can take two doses of my painkillers). I always carried my TENS machine, so I could do preventative pain relief as I walked. Do your best to pack an “emergency pack” of what helps you in your suitcase. For example, I packed some heat pads and some of my favourite foods from home. Stay calm, and realise that you’re still on holiday and even a pain-filled day can be rescued change your plans if you must, adapt and enjoy where you are as best you can, nothing is ruined.

When you get back

Have a holiday after your holiday

Take a few extra days to adjust to being home. I took five extra days off work to recover after a two week stay in Japan. You’ll need time to catch up on things, and a couple of days to get over the jet lag. Most importantly though you’ll be tired, and this extra you time acts as a buffer, letting you soak up some of the extra energy you’ve expended, making you truly ready for life after your holiday.

Get back into a normal routine

You might feel like at times that you just want to sleep when you get back, but try to get back into your routine as soon as possible. Stay busy (to combat jet lag) and get as much natural light as you can. When you’re feeling low or in pain in the future think about how far you’ve come to take such a wonderful trip, and let those memories keep you going.

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My name is Michelle and I've been living and working with endometriosis since diagnosis in 2010.

I hope to provide some hope for this illness through practical advice and discussion of this awful disease.

My other sites

Pioneer Project - Video games, UX and sustainability