In 2019, I went on a road trip from New Mexico to Montana and then to Michigan. That trip was incredible, but I was still new to understanding my chronic illness. I have been chronically ill for over half of my life, but it took me a long time to get my diagnoses (which includes Postural Orthostatic Tachycardia Syndrome (POTS), celiac disease, and many gastrointestinal issues). I was not proactive in taking care of myself and would just hike, hike, hike, and then only rest when my body demanded it.
Last May, I decided that by the fall, I would quit my job and go on my second major cross-country road trip. I hoped that my body would be in a place where I could travel again after over two years of being in and out of hospitals and being bedridden.
Unfortunately during the summer, I got extremely sick again. I could barely leave the house due to intense chronic pain and gastrointestinal issues. Fortunately, at the end of October, I had a procedure that reset my system just a few days before I was supposed to leave for my road trip. I got cleared to travel by my doctor on a Friday and left on Tuesday. I told very few people I was going on this trip until right before because I truly had no idea if it would happen, and I wouldn’t be able to handle the disappointment of telling everyone it was canceled. I didn't put a timeline on anything because I wasn't sure how my body would hold up. Amazingly, my body did well in large part because of how I cared for it. I drove 10,000 miles over 9 weeks, visited 28 states, hiked hundreds of miles, rested when I needed to, and ate incredible food (well, most of the time I was just eating salami and turkey sandwiches, but in between sandwiches I basically went on a celiac-safe restaurant tour of the US).
Going into this trip I knew that taking care of my body would be my top priority. I learned a lot while traveling, so I have created a list of tips for road-tripping while chronically ill.
Going to a National Park? Get an Access Card!
If you are disabled and want to get into National Parks for FREE FOR THE REST OF YOUR LIFE, get an Access Pass. It will get you into any National Park free of charge. You are eligible for one if you are a “US citizen or permanent resident of any age that has been medically determined to have a permanent disability (does not have to be a 100% disability) that severely limits one or more major life activities.” To learn how to apply, you can check out the National Park Service’s website here. I was able to get a pass with documentation from my doctor.
Scenic drives are a wonderful way to see a National Park
Hikers love to look down at people who just drive through National Parks, but that is ableist. I LOVE a scenic drive. You get to see a broader view of the park, and it allows you to give your body a rest. Some of my favorite parks with scenic drives include Sleeping Bear Dunes, Petrified Forest, and Great Smoky Mountains.
Book refundable hotels, excursions, etc.
It’s not always possible to book refundable things, but when you can, I highly recommend it. Many places will have you pay a small fee (sometimes as little as $2), which allows you to cancel before your scheduled arrival. For me, it’s been worth it to pay that extra money. It’s often when I didn’t pay the fee that I’ve had to cancel and wind up losing way more money.
Don't hike yourself into a flare
I love doing it all. I’ll do a 12-mile hike one day, a 10-mile hike the next day, and then say, “Who needs rest? What’s 5 more miles!!” While this is possible at times, it is not sustainable over a long trip. Resting is key. I have absolutely hiked myself into several flares because I pushed myself past my limit. Slow down. You will never be able to see the entire world, and that is okay.
Schedule in your rest days. If you’re traveling for a long time, make sure to schedule multiple rest days in a row
Be proactive in taking the time to rest. When I went on my trip this fall, I was really good at scheduling one day every week or two where I was resting. HOWEVER, after several weeks, I was exhausted. I ended up booking several days in a hotel to reset. This was a game-changer. Driving and going from place to place can be tiring. Allowing multiple days to be in one place is was rejuvenating.
When looking for celiac-safe restaurants, use Reddit and TikTok
Most people with celiac know about the app Find Me Gluten Free. I actually found the best restaurants by using Reddit and TikTok and searching “Best gluten-free restaurants in [insert city].” You can see my favorite restaurants here.
Make sure to have any as-needed medication in your bag with you at all times
Prior to getting on the road, I did not carry my as-needed medication with me (which is wild). I now have two pill containers with me at all times. Such a game-changer.
You can often transfer your medication to different pharmacies around the country
I get my prescriptions through CVS. When I am in a new city and need a refill, I call CVS and they will fill it for me. Almost every place I visited had a CVS within 30 minutes (and usually closer).
If you have any medication that can’t easily be found at a pharmacy, make sure pack enough for the entire trip!
I have some medication and supplements that I can only get online. I brought enough of these medications with me for a month, and my plan from there was to have the rest of it shipped to a friend’s house, where I was supposed to spend Thanksgiving. Unfortunately, those plans fell through. Luckily, my brother had a work trip in Palm Springs, and I was able to move my plans around to meet him there and get the medication. I still have no idea what I would’ve done if he didn’t have that work trip. I never want to risk that again. In the future, I will bring enough of that medication to last the entire trip.
If staying in a hotel or at a friend’s house, bring all your meds inside
Even though I had a huge bin of medications with me, I always brought it inside with me. I never wanted something to happen to my car and then to be without my medication on top of that.
When booking campsites, you can request to be near a bathroom (and if you're dispersed camping, make sure to bring a shovel—sorry, it’s gross but needed!)
This is pretty self-explanatory. If you can choose a campsite, pick one near the bathroom.
Pro tip- if you are dispersed camping when it’s cold out, make sure to dig the hole before the ground freezes (sorry TMI, but I would rather you hear it from me than learn the hard way)
You’re allowed to be sad if you have to miss out on something because of your body
Being chronically ill is HARD. It sucks when you have to cancel something you were really looking forward to because you’re too sick. I used to be the one who would push down that sadness or disappointment. Because I wasn’t acknowledging those feelings, it allowed them to grow. Now if I am disappointed, I let myself be disappointed. And you know what the amazing thing about that is? The feeling eventually goes away because I actually let myself feel it. From there, I can move on and feel gratitude for where I am.
Thank you. This is very relevant to me and very helpful.
Love love love this!!!! So wise and imminently practical. And, as always, so generous in sharing ideas you had to learn the hard way.