Introduction
This story reached its first crescendo in early 2019. I was one year post-college, fresh out of a long-term relationship, and reconsidering a job I had dedicated my life to obtaining up until that point.
I was experiencing a lot of changes all at once and was just beginning to forge a support system in a new state. Pennsylvania is land locked, but it might as well have been an island.
My diagnosis process lasted nearly a year from the onset of my symptoms. I was tested for a variety of diseases, constantly poked and proded by sharp needles and cold gloves. Then, one day, I finally gained an answer: I was born with an autoimmune disease that attacks my large intestine. This illness, called ulcerative colitis, often lays dormant until it is triggered by inflammation, which can be as tangible as a cheeseburger and as nebulous as stress. Many but not all patients experience their first symptomatic flair in their early 20s. I'm a prime example of that.
This diagnosis was the scariest, most foreign (often embarrassing) experience I've ever known, and I had to shift every aspect of my lifestyle to exist in my new normal. I halted my beloved HIIT workouts to reduce risk of inflammation. I sat through hours of iron infusions via IV to treat the anemia that had resulted from blood loss thanks to my illness. I stopped being vegan because beans and raw veggies were no longer tolerable.
In 2021 I entered remission and now live a fairly normal life. I inject medication weekly and hold sacred my self-care practices like yoga to minimize stress. Getting to the other side of this nightmare showed me that I have the strength, flexibility, and perseverance to build the life I want in spite of obstacles.
So I wanted to write this post to celebrate and validate fellow people who live with chronic illness. I also wanted to address questions I've received from the healthy people in my life because, whether it stems from concern or love or ignorance, we often attach limitations to people with health conditions. But these stigmas don’t dictate reality. Lives outside the bounds of "normal" and "healthy" are still vibrant and fulfilling. They may just require a different approach.
That being said, obviously, my disease poses some logistical and psychological barriers to care-free travel. Over the past few years I've learned a lot and have managed to explore beautiful and diverse parts of this world while protecting my health. So let’s dive in.
Logistics
I inject my medication every Thursday, which lives in a device similar to an EpiPen. My pens need to be refrigerated until a half hour before I use them. I strategically chose Thursday as my dose day when I was prescribed this drug because I knew that when my health reached a safe threshold, I would be able to inject and then take off on a weekend trip fully insured. (The power of forward thinking, am I right?) This is also why my blog has so many itineraries that are 72 hours or less (weekend trips for the win).
When I do travel with my meds, I always store them in a designated and clearly-marked medication bag that’s stocked with alcohol wipes, bandaids, and an ice pack. I reached out to my drug manufacturer for this bag and travel-sized sharps containers, which come in clutch on the road. These supplies always stay in my carry-on or personal item for easy access during airport security screenings. I never store my medication in checked luggage in case it were to get lost or delayed.
I learned the hard way that TSA will remove any ice pack that isn't 100% frozen solid, even if it’s in a clearly-marked medication bag. So I always set a reminder on my phone to pull an ice pack from the freezer on my way out the door to the airport. Most hotels or Airbnb's have a freezer and fridge available to guests, but I always double-check with the accommodation before booking.
I learned that insurance companies may pay for a 30-day supply of medications at once. So, if I ever plan to travel long-term, I know I can meet with my doctor to discuss options for stockpiling the medication I’ll need. I also keep my health team privy to any international trips l I have planned so they can review my current status and offer recommendations, which I respect and adhere to. This is a chance for me to learn about and schedule any immunizations I may need for safe travel as an immune-comprimised person.
Regarding my itineraries, I always schedule downtime to rest in my hotel or lay in a park. As most people with chronic illness will tell you, we need to have a strong connection to our bodies. Plus, our bodies are constantly working (either for us or against us) so we get tired a lot quicker than folks who don’t have autoimmune conditions. Oftentimes, our symptoms start off small but can quickly snowball into debilitating experiences. It can be hard to notice the warning signs amid the excitement of travel so I dedicate time each day of my trip to check in with myself. I also stay flexible and accept that sometimes I just need to go a little slower than I want to. I’d rather pause, skip an excursion, if that means I avoid getting sick away from home.
Dietary Considerations
My disease attacks my digestive track so food plays a huge role in my decision-making. First and foremost, I do my best to stay as hydrated as possible, especially on airport days, as dehydration makes me more prone to flairs.
I also try to stick to an anti-inflammatory diet as much as possible while traveling. If I'm unable to find restaurants that suit my needs, or if I’m feeling extra sensitive, I often opt to eat from grocery stores so I can control the ingredients I consume. I've even been known to pack storage containers for meals on the go (silicon Stasher bags for the win).
Honestly, I've found it a lot easier to follow my preferred diet outside of the USA because most countries consume less fried foods, cheese, and gluten than us Americans (three of my biggest triggers). Anti-inflammatory, travel-friendly meals I lean on include tuna salad and tortilla chips, rice and veggies (always cooked until mushy to aid in digestion), and chicken (grilled not fried) with lightly salted baked potato.
Most hotel continental breakfasts include items I can eat with ease, such as hard-boiled eggs, fruit with no skins (melons are my favorite), and oatmeal that I cook with non-dairy milk or water.
I also avoid hard liquor, as this severely irritates my digestive tract. Sure, I would love to kick back on the beach with a margarita as much as the next guy, but sometimes it’s not worth the risk of a symptomatic episode. I view it as a give-and-take. Travel is the overall gift and, for me and my condition, that requires some sacrifice in other areas. I don’t see this as missing out but as taking appropriate steps to enjoy my fleeting time in a new, beautiful place. I don’t need a cocktail to build a rewarding memory.
I’ve maintained remission for over 2 years now (yay!) so, in moderation, I can indulge in foods I’m sensitive to (I still dream of that bifana in Lisbon). Still, I make sure to always pack Lactaid pills and an abundance of peppermint supplements (I use IBGuard), as they settle an upset stomach in cases where I overdo it.
Emotional Well-Being
A yoga mat may seem frivolous to pack in a carry-on, but I view this daily practice as medicine. Regular physical activity is important for my symptom management. It also alleviate stress, which is a major trigger for flairs. So, especially amid the hustle and bustle of travel, I've learned to stay true to my self-care and exercise routines, even if that means setting up my mat in the tiny sliver between two hotel beds.
While in crowded spaces or during travel days, I will often wear a mask. This practice was normalized during pandemic and has stuck for a lot of people no matter their health status. As an immune-compromised person, I appreciate that my mask doesn’t make me stand out in a crowd.
Another way I safeguard my emotional well-being is through travel insurance. Luckily, I have a travel credit card that includes insurance for coverage amid accidents. My employer health insurance program also offers domestic and international medical insurance.
When traveling internationally, I take it one step further (pun incoming) by registering with the STEP program. This is a free service for U.S. citizens or nationals traveling and living abroad. We can enroll our trips with the nearest U.S. Embassy or Consulate, which is great because U.S. Embassy officials can help travelers locate nearby medical services. The Embassy will also notify family and friends in the event of an emergency.
Reliable Resources
I now want to share some resources that were designed to support, educate, and advocate for travelers with chronic illnesses or disabilities.
TSA provides a service specific to travelers with medical considerations. We can contact the helpline toll-free at 855-787-2227 for assistance navigating the security screening process. Plus, their website, TSA Cares, provides information on screening policies, procedures, and security checkpoints. TSA Cares was designed to assist travelers with disabilities and medical conditions and others who may need additional assistance with screening. If you require in-flight assistance or wheelchair assistance from the curb to your aircraft, you can contact your airline to coordinate those services.
The Society for Accessible Travel & Hospitality (SATH) is a nonprofit with a plethora of credible resources on this topic. Their blog articles and tips outline travel safety for a range of cognitive and physical conditions. Further, SATH acts as a reputable voice in this space and is dedicated to advocacy and education to, and I quote from their mission statement, “remove physical and attitudinal barriers to free access and expand travel opportunities in the United States and abroad.“
I admire these efforts, and feel hopeful that the travel industry will continue to become more and more accessible thanks to resources like these.
Conclusion
Traveling with a chronic illness can seem scary, especially if you were recently diagnosed. And I’m not going to deny that it has posed some challenges in my life. I remember receiving my diagnosis and thinking I would have to fully sacrifice my adventurous spirit to safeguard my health. But that was not true.
I just had to reframe my perception of travel from one of spontaneity and completely care-free to one of mindfulness and established safeguards. I adjusted my expectations and then leaned into planning and preparation for what I knew I would need to control. I also focused on strengthening my connection with my body so, no matter where I am or what situation I’m in, I can keep an eye on my symptom warning signs and respond appropriately.
I am able to effectively care for myself, keep my condition in check, AND still explore the beautiful cultures and communities beyond my comfort zone. Well, now that’s given me a level of confidence I didn’t know existed.
So yes, I have a chronic illness with very real triggers. And yes, I have to navigate the world with more pre-meditation (and medication) than people who don’t live with a diagnosis like mine. But my life is still vibrant and fulfilling, and I can still indulge my passion for travel without sacrificing my safety.
I hope this article, outlining the steps I take and the effort I put into protecting the remission I worked so hard to achieve, provides peace-of-mind to those who may have worried about that.
To my fellow immune-comprised travelers, I hope you know that you are both worthy and capable of seeing whatever destinations you are curious about. You can stay safe while indulging that curiosity budding inside your chest. The world is a beautiful place, every corner of it, and we have just as much a right to witness it for ourselves.