How to travel with a disability

I want to start by saying that “disability” is a broad term and I know that. I have an autoimmune that acts in a way similar to food allergies. I didn’t want my title to be “how to travel with food allergies/autoimmune diseases/and disabilities,” but instead I hope this can encompass all 3 and maybe more. I am open to any and all feedback regarding this and would love to be more educated on the topic. So if you have any tips or suggestions, please put them in the comments and we can start a dialogue :)

Michelle backpacking in Wyoming

For this post, I’m really excited to share my own story and also share a friend of mine, Michelle. She has Type One Diabetes and an autonomic dysfunction called POTs. Michelle says, “POTs is when your autonomic nervous system struggles to function correctly largely due to irregular blood pressure and heart rate.” She says that it varies person to person, but her symptoms include fainting, severe exhaustion, digestion issues, mood swings, and veritgo. However, she has gone from being bed bound for a month in high school to now being a river guide! Michelle has her own blog to chronicle her experiences in her van and she wrote an amazing post on her experiences with her disabilites. She also just started selling custom line drawings, so check out her instagram @mustbelivinright and show her some love :)

I was diagnosed with Interstitial Cystitis in May 2019. It is chronic UTI symptoms mostly caused by “trigger foods and environments.” It can be pretty debilitating and frustrating, especially when traveling. On bad days, I use the restroom anywhere from 20-45 times a day. Some of the things I can’t eat anymore are: chocolate, fresh tomatoes, coffee, soy in preserved foods, and oranges. There are more, but those are my big ones. My reactions are frequency and urgency issues and also some pretty crippling back and kidney pain. I avoid these foods as best as I can, but sometimes things sneak in (who knew soy was in SO MUCH FOOD). Cold weather is a trigger for me, also (thank god for hot pilates). I first started having symptoms when I was in Poland in 2018 and it was pretty scary and unnerving. One of the many breakdowns I’ve had included calling my dad crying in the middle of the night because “I’d never be able to eat in Italy” due to the tomatoes. Since then, I’ve tried to get a better grip on my symptoms and learn to manage it better. It’s still a process but here are some things that I have learned that can help.

My first one is to be kind to yourself. It can be hard when you’re traveling with a group and you feel very limited. If you start having symptoms or are struggling, take some time for yourself and relax. I know for me, when I start feeling like I have to use the restroom nonstop, I get so frustrated and angry and my anxiety goes through the roof. Does that help? Absolutely not! It makes it worse! Michelle says her diabetes can exacerbate her POTs and that she gets anxiety whenever she has a bad day about being bed bound again. I (sometimes) notice that when I’m not feeling great, and I just take a seat and take a beat to extend some kindness and grace to myself, it helps. Even if it doesn’t, you shouldn’t beat yourself up over something you have no control over and can’t help.

For the first few months, I cried and cried and cried to my boyfriend and felt so guilty. I’m already a homebody and he loves to go out, but with this added stress and the uncertainty of when a flare will come about, I never wanted to go out. He was always so kind and understanding and loving and it made it so much easier to deal with. Surround yourself with those who love you. Nothing is worse than not feeling great and being with someone who 1. does not care/acts annoyed, or 2. makes it about themselves. If you have friends like this, you should probably drop them. Or at the very least, not travel with them.

Have a discussion. I make sure to let my travel buddies know “hey, this will probably happen, so if you feel restricted by my inabilities, then go on without me and I’ll catch up.” By having this discussion prior to any trips, this sets expectations and I won’t get my feelings hurt if they want to do something that I feel I can’t do. If you’re traveling with friends and loved ones, they should absolutely be understanding and kind about this.

Michelle went on a 3 week backcountry river trip to the Grand Canyon and during week 1, her insulin pump broke. She said her insulin pens she brought as backup were a bad batch too… she got so angry she threw her pump at a boat and started checking her blood sugar the old school way of having to have paper logs, and using a syringe and vial to take her insulin. Which sounds horrible in a backcountry trip! She says, “but I was slow with myself and just did the best I could. And that is all we can do, we aren’t perfect machines.” She also agrees with having a discussion. She says she doesn’t hide her injections, as it usually opens up a conversation and most people are willing to help. She simplifies the POTs though and just warns everyone that she has to stay super hydrated or she’ll faint, but she does have at least one person on her trips who knows the full story, which is usually her boyfriend, and he knows what to do when “shit hits the fan” :)

My friend after we had to stop so I could hide and pee.

Funny story : one of my best friends came with me to Berlin and Estonia in February 2020. I was flaring almost the entire trip and I felt so bad and had a few grumpy moments. At the end of the trip, we went hiking with a group and tour guide in Saxon and Czechia. I had to pee SO BAD. I had taken so much azo that my kidneys and back were killing me and I could not get any relief. She was so wonderful, and at one point she held back from the group with me and pretended we were taking pictures so I could pee in between some crevices in this mountain range. A TRUE FRIEND.

For all of mine and Michelle’s diseases, there isn’t much to do about it. I can take azo and that sometimes helps. She has her insulin and has to stay hydrated. But there aren’t any cures for any of our issues. For me, being able to relax for a good bit, take a HOT bath, and drink lots of water helps most. This has been hardest on me while traveling because I love to GO. It has really made me tune in to my body more often and do check-ins to make sure I’m taking care of it. Michelle put it perfectly by saying, “despite the fact that I want to go do all the things, I have to slow down and make sure I don’t use all my tickets for the fair in an hour so to speak.” Similar to being kind to yourself, give yourself some grace and be able to adjust. I can assure you that my trips since my diagnosis have not looked the way I planned due to random or constant flares. I was moody in places I should’ve been joyous. I was tired when I should’ve been energized. But being able to say to yourself that this is your new normal and it is okay, is so important. Michelle says “Despite being as prepared as you can be, life is still going to throw you curveballs, so being able to adjust with the wind is so important I think.”

Know and bring your comforts and needs. I packed so much Azo for my trip and tried to be in a hot/humid environment (showers, baths, saunas) as much as I could before going out into the cold. I take breaks when I need them now and not just at the very end of the day. I bring snacks I know I can eat and bring my own coffee alternative to help me out. Michelle always has salty snacks, electrolytes, and fruit snacks. She makes sure to have her insulin and glucometer stuff with her and is sure to sleep.

On this last trip, I made sure to have a translation of my food triggers (I just say they’re allergies to make it easier at restaurants) and brought that with me. I never needed the translation, but I felt more prepared having this. If you have any special needs, be sure to know how to say it in that language or have it written out.

This post will have more added to it the more that I travel and learn about my disease. Please be sure to talk to your doctor about your specific needs and whether travel is advisable. Like I stated above, if you have any tips for this, please put them in the comments so we can all start a dialogue and learn more about this :)