When my life was drastically altered by chronic illness three years ago, travel fell to the bottom of my priority list. Travel by plane had previously been draining for me even as a mostly able-bodied person, and so I worried that it would now be far too challenging with the pain, fatigue, and neurological symptoms that I experience most days. In the spring of 2019, I received funding from my college to travel from New Hampshire to Chicago to present at an academic conference. While I wasn’t sure how the process of getting there would go for me, I knew that I would have regrets if I didn’t try. I decided to book my flight and hope for the best.
How I Prepared
I did everything I could think of to set myself up for success on my trip. I requested wheelchair assistance through American Airlines at the airports, sacrificed precious carry-on space for medications and healthy snacks, and booked a shuttle which would bring me to and from Chicago O’Hare to avoid the stress of public transportation. Once in the city, I planned on using Uber frequently to avoid too much walking. I also emailed conference staff prior to attending to ensure that I would have a chair available to sit in during my poster session if I were to need it.
My Experience
Overall, my trip was successful and a great experience, though certainly not without its challenges. Wheelchair assistance was extremely helpful for me in minimizing the impact of travel on my body, and the process went especially smoothly for me at O’Hare. I would recommend this accommodation to anyone with chronic pain, fatigue, or neurological symptoms that are significantly exacerbated by exertion. I still flared some from traveling, but believe that wheelchair assistance was a major factor in making it possible for me to still have a good conference experience while in Chicago. More information about accessibility at O’Hare International Airport is available here.
I was relieved that finding food to fit my dietary restrictions in the Chicago Loop area was quite easy. I especially enjoyed the gluten-free pizza at Giordano’s and my gluten-free donut from Do-Rite Donuts & Coffee. There was a Freshii located within the Palmer House Hilton Hotel where the conference was held, and so I was able to find healthy, gluten-free options there as well.
What I Wish I Had Done Differently
Since I received funding for a two-night stay in Chicago, I only actually spent one day at the conference and exploring the city, and the other two days mostly traveling. The trouble with this itinerary for someone with a chronic illness is that there is almost zero recovery time built in. I’ve learned that whenever possible in future travels, I will need to invest in an extra night or two at my destination so that I have some time to rest before and after flights. It also probably would have been smart for me to book a departure flight from Boston in the morning rather than the afternoon, as this would have given me time to rest for a little while when I first arrived at my hotel, before it was time to dive into activities and head out in search of somewhere to eat dinner.
My shuttle ride from O’Hare to my hotel when I arrived in Chicago turned out to be a nightmare, and I regret not reaching out to a friend familiar with the city prior to my trip to ask some questions about transportation. I had expected the ride to my hotel to last less than an hour but didn’t factor in the horrific rush hour traffic which would cause me to sit in the shuttle for almost three hours. By the time I got to my hotel, I was exhausted. Two extra hours sitting in a van on a busy travel day is a big deal for someone with chronic pain and fatigue! Next time I travel, I will ask for information on transportation and traffic from a local prior to my trip, if possible.
What I Learned
This short trip was incredibly meaningful to me. It showed me that while travel in my current health circumstances is not easy, it’s possible. I now feel confident that with proper planning, appropriate accommodations, and a little bit of luck, I will travel again soon. This experience required some vulnerability since I had to be more open about my physical limitations than I usually am with my college classmates, so the trip provided important practice in advocating for myself.
When I left Chicago, I felt disappointed that I had not gotten to do more in the city. I blamed this on the fact that I’d spent a few hours resting in my hotel room the previous day while my classmates explored. It was important for me to remind myself that regardless of chronic illness or disability, most people do not have time to do all that they want to in a new city when they are only staying for two nights. Additionally, rest will realistically be a part of travel for me going forward, and that is okay. Travel is still meaningful and worthwhile even if I do not see and do everything.
Traveling alone with chronic illness can be particularly stressful and draining. While I met up with college classmates in Chicago, I flew by myself. I know that future travel will be easier for me if I am accompanied by a family member, partner, or close friend. However, I am grateful for the experience of traveling alone with chronic pain and fatigue because it strengthened my sense of agency and helped me feel more confident in my self-advocacy.
Now that I’m a bit more comfortable traveling with chronic illness, I can’t stop thinking about where I want to go next!
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