Traveling With Chronic Pain? Tips From a Spoonie

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Last January, I had a terrible flare of what I soon learned was psoriatic arthritis. I had to learn how to travel across the country by myself with an uncontrolled autoimmune disorder. I had to adjust my daily life to being a spoonie. (“Spoons” are finite units of measurement that those of us with chronic illnesses use to budget our energy throughout the day – more explanation here.)  But how could I adjust my travel plans?

Airports Are Big. Flights Are Long. Plan Ahead.

• Purchase your tickets well in advance so you can select your seat – and buy as much comfort as you can afford. Take Business class if you can swing it. If you’re in economy, try to get a seat with extra leg room. And take the window seat. If I can avoid basic economy center seats for the rest of my life, I will.

• Get to the airport early and check your luggage. Even if it’s a carry-on size roller-bag. When I fly by myself, I only carry on the backpack that I can put under the seat in front of me. Managing extra luggage just means additional pain for my hands and wrists.

• Use a wheelchair. When I asked for travel tips, one of the things my friends and family repeatedly advised was “swallow your pride.” I have a hard time with this. I want to muscle through. But, even in small airports, I find it’s a mistake to think I can muscle through and go without a wheelchair. (And even if I can, I’ve then spent a spoon or two that I might want to save for after I land at my destination!)

You can reserve a free wheelchair service when you buy your ticket. But whether you reserved it ahead of time or not, when you arrive at the ticketing counter to check that luggage, let the agent know that you need a wheelchair. Usually, someone wheels a chair out for me to sit in while they dispatch a “pusher” out to me. Again, planning well in advance is necessary, because this can take a while if it’s a smaller airline and has a shared pool of wheelchair attendants. The service is always free, but it is customary to tip your wheelchair attendants. They are so nice and friendly, it’s hard not to overflow with gratitude.

The wheelchair attendant will scan your boarding pass – this is very important, because for some airlines, that’s the only way to ensure you’ll have one waiting on the ramp upon arrival at your destination. (Yes, you added it to your ticket when you bought it, but that doesn’t guarantee someone will be waiting. Also, just because you added it to your ticket doesn’t mean anyone will notice until you say something at check-in.)