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As someone who has lived with chronic illness since my youth, I spent many years believing I would never be able to travel. With fatigue and pain as constant companions and the ever-present threat of flare-ups requiring immediate surgery and/or hospitalization, it seemed a wiser course to stay close to home. The familiar was my friend — my own food, bed, routine, pharmacy, and physicians. Yet here I am in middle age, still living with illness, and — surprisingly — a passionate traveler.
Practical Matters
If you live with chronic illness and you’re going to travel, you need to be realistic about your condition. Regardless of health status, travel pushes us outside of our comfort zones. For chronically ill people, this is more than an unpleasant annoyance and needs to be anticipated and mitigated. Especially when traveling with healthy people, we need to be clear-headed about what we need and aware that it may differ from what our companions prefer.
- Mode of travel: How long a journey can you manage? Do you need a train or plane seat close to a bathroom? Will you feel better if you bring your own food for the trip? If you’re traveling a long way, do you prefer to push yourself for one long day or split up the trip into shorter journeys with layovers in between? Make sure to acknowledge the increased fatigue and discomfort you will experience, and be creative in finding ways to minimize it.
- Lodging/Food: Do you need air-conditioning? Do you require a central location? Are there particular foods you can/cannot eat? Do you need to pack your own food?
- Scheduling: Do not schedule too many activities. I’m going to repeat this because I’ve learned this the hard way: Do not schedule too many activities. You’re going to be so excited to get out and explore your new surroundings that you’ll be sorely tempted to push yourself. Resist this temptation, and incorporate rest times into your plans each day. It will be counterproductive to try to see and do everything, so slow down and drink in your new location at a leisurely pace.
- Medication/Medical Treatment: Check in with your doctors prior to your departure. Bring with you (in your carry-on bag) more than enough of your daily medications. Ask your doctor about bringing medications you would take if your condition worsens, including pain medication. It never hurts to be prepared. Before you travel, get the name, location and contact information for the hospital you’d use if necessary.
- Post-Travel Adjustment Time: You may not be able to head back to work the day after you arrive home. Plan recovery time as needed and incorporate it into your vacation plan, even if it means returning home earlier than you’d prefer.
The Benefits of Travel for People Living With Chronic Illness
Can it be burdensome to travel as a person with chronic illness? Yes. Can it be risky to travel as a person with chronic illness? Yes. Do I nevertheless recommend it wholeheartedly? Emphatically, yes.
Travel and the Relationship to One’s Body
"I’m trapped in this body,” one of my chronically ill clients says ruefully. “I can’t escape it.” How well I understand her. We are hyperaware of the signals our bodies emit in the form of symptoms, pain, and fatigue. We have learned to heed the continual caution signs our bodies throw up, ever-mindful of how we move, what we eat, when we rest, and how we live. Each decision we make is dependent upon almost-automatic consultation with our bodies. “Can I do this?” we ask, “or is the cost too much?”
Travel is an antidote to this trapped feeling, allowing us to wander around new surroundings, see unfamiliar sights, and experience ourselves in new environments. So much of living with illness is about managing limitations; travel offers a feeling of expansiveness that is exhilarating in its rarity.
Paradoxically, as a way of coping with bodies that often hurt, many of us who live with chronic illness distance ourselves from our bodies. We don’t have the easy, automatic connection that many healthy people have to their bodies; rather, we’re wary and — especially when things are going well — we don’t want to think about our corporeality.
Travel can move us into bodily awareness in a way that feels pleasurable and immediate. The sensory experiences of new sights, sounds, and smells are felt through this body, in this place, at this time. Travel makes us grateful for the ways our bodies allow us to take in the world, a powerful feeling that we can call up even when we’re back at home.
Travel and the Multi-Faceted Self
To travel is to experience connection with the world outside of ourselves. We connect to history, to art, to nature, and to other people when we travel. We are so much more than our illness, and travel reminds us of this fact.
I am a person who lives with Crohn’s Disease. I also am a person who has walked through the bright bustle of Times Square at midnight, a person who has watched the sun rise over the Arno River and set over the Seine, a person who has felt the sand in my toes and the wind on my face as I watched California surfers ride the waves of the Pacific Ocean.
Travel and Taking Up Space in the World
I’ve noticed that people who live with chronic illness tend to apologize a lot. We apologize to friends: “I’m sorry that I can’t go to your party.” “I’m sorry that I can’t eat that food.” “I’m sorry that I need to rest.” “I’m sorry that I can’t participate in life the way that you do.” We apologize to medical providers: “I’m sorry that I’m sick in the middle of the night.” “I’m sorry to ask you to explain that procedure/medication/side effect one more time.” “I’m sorry that my body isn’t responding to the treatment you’re providing.” We apologize to the world at large: “I’m sorry that I need a seat on the subway even though I may not look sick to you.” “I’m sorry that I’m walking slowly and need to stop now and again to catch my breath.” “I’m sorry that my illness makes you uncomfortable.”
We need accommodations when we travel. If I traveled like a healthy person, I would end up in the hospital (been there, done that). If I travel like me, I end up with incredible memories that broaden and deepen my identity.
The world isn’t just for healthy people; it’s for all of us. I’ve been able to travel because I’ve insisted on shaping my trips in ways that work for me and accommodate my illness. I apologize much less frequently these days because I’ve learned that I’m allowed to take up space in the world — all of it — just as I am. The point of this column is to say that you’re allowed, too. Bon voyage!
