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10 Tips for Traveling With Chronic Fatigue Syndrome

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Traveling with chronic fatigue and immune dysfunction syndrome (CFIDS) is one of the biggest challenges I’ve ever faced (it comes in second to living with CFIDS, to be honest). For those unaware of CFIDS, it’s a neuro-immune disease for which there is no cure.

You constantly feel like you have the flu and have been run over by a semi-truck. Your body hurts all the time, your brain is fogged and you have to carefully ration your energy. You can make plans but never know if you can fulfill them because your pain and energy levels can change in a minute. And no, it isn’t the same as feeling tired all the time.

So what if you have CFIDS and love to travel? While it can be difficult (and may make you sicker for a while), I believe it’s well worth doing. There’s a lot you can do to prepare beforehand and while you’re traveling that can help.

If you’re living with CFIDS, remember to space out your energy expenditures. You might only be able to travel once a year (or less, or more), so listen to your body.

Here are my 10 tips for traveling with CFIDS:

1. Plan ahead as much as possible.

If you can do the bulk of the work beforehand at your own pace, you’ll be able to control the energy expenditure for this process. Figure out routes that will save you time and energy. Research the restaurants you would like to eat at and the grocery stores where you can stock up. Figure out if attractions are worth visiting and if they’re accessible to you. Learn any phrases you’ll need in a foreign language and download a language translation app to your smartphone or iPad.

2. Be realistic about what you can and can’t do.

You might be able to do one big thing a day (or some days, none). Seeing a little bit of a place is much better than seeing a lot of the ceiling in your hotel room. Ask locals for the best off-the-beaten path things to see and do, since they’ll be less crowded and you’ll be able to experience them at your own pace. One of the best times I had in Ireland was at a quiet library, talking with the librarian about books we loved, swapping library stories and gathering information on great places to eat and a hidden beach.

3. Don’t be afraid to ask for help.

Whether it’s a wheelchair when you’re too tired, a rest from traveling or help with something as simple as helping place a pillow behind your back in the car, people will be happy to help you. I know it’s difficult to ask for help; it goes against our desire to live independently. But don’t try to pass as abled, it will only make you sicker. We all know this, do this and know we shouldn’t.

4. Schedule time for rest in between socializing.

Many travels are around events: holidays, weddings and reunions. This is a great time to make sure that you tend to your body as best as you can. If you need a daily rest period, make sure to work it in even if you would prefer to stay and talk. You’ll emerge refreshed and will able to interact with a clear head instead of in a fuzzy state where you don’t remember a thing and you probably won’t have any meaningful conversations. Beforehand, ask the host for a quiet place to rest. They’ll be happy to help.

5. Maintain your routine.

Be sure to pack your vitamins and medicine for starters. But if you prefer a super green smoothie for breakfast, find a way to get a super green smoothie for breakfast instead of loading up on pancakes or nibbling a granola bar in the car. If you’re always cold, be sure to pack enough warm clothes to help. If you need a heating pad, bring one. The list goes on and on and differs for each person, but it’s worth noting what you do every day to make life easier for yourself (and less painful).

6. It’s OK to pay for help.

Whether it’s travel planning or hiring a guide at your destination, it’s OK to pay for help. One of the best things I ever did was hire a driver in Paris. The Metro was too difficult for me and driving was out of the question. It made my visit there a great deal of fun, and I had a safe, reliable transportation option (with travel advice from a local).

7. Don’t try to do everything.

This might be the hardest thing to do for many reasons. You’ll want to see and do everything. You’re out and about, and it’s so enticing and so different from life at home. But this is exactly why you should under-plan — and under-do — each day. You’ll have time to rest and also allow time for serendipity.

When you look at the top 10 lists of things to see in each place, look carefully at each item. Are you totally interested in seeing a particular one? Find your passions and work those in. It might be a restaurant, some incredible landscapes or you just want to sit and drink coffee in Paris. Cut down on what others say you should see and work out what you totally want to see.

8. Communicate with your travel partners.

Once your travel partners know your limits, they can help you and also choose to do other things while you rest. They will also know that no matter what you want to do, they should help guard your energy and time from others — and yourself. I always want to push myself and experience all I can, but my husband reminds me and reigns me in when I get that super tired look in my eyes. Sometimes, we’re our own worst enemy.

9. Consider renting a home or apartment when you travel.

We always do this when we travel for several reasons. There are spaces away from common living areas in which to rest (instead of one hotel room, where rest is nigh impossible with a family). There’s a kitchen, so you can eat when you want without having to expend the energy on being in a restaurant. You can also have a variety of healthy snacks available.

10. Don’t forget to pack what you need for traveling to and from home.

Because I also have mobility disabilities, we always rent a car. Cars can take you right to the door, so you’ll be able to save your energy for the place you’re going instead of spending it on getting there. Pack enough pillows so that you can sit comfortably, stop at every rest stop to move around a bit so your muscles don’t cramp up and create a restful car environment.

If you’re flying, pack all medications in your carry-on. Bring earplugs or noise-canceling headphones. If you can, bring a small pillow to ease your neck. Also, ask for transportation to and from the gate. This will not only help with your pain and fatigue, but help you avoid huge crowds, pushing and noise, too.

Traveling with CFIDS might seem like an enormous undertaking. And, to be honest, it is. But it’s worth it. Explore the world on your own terms. It’s the best gift you can give yourself.

Jessie Voigts the mighty.2-001

A version of this post originally appeared on Wandering Educators.

The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? If you’d like to participate, please send a blog post to Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

Originally published: July 22, 2015
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