How I Travel With a Chronic Illness

"Still round the corner, there may wait, a new road or a secret gate."
– J.R.R. Tolkien

Living in a body with a chronic illness is a challenge. My spirit is still very much alive, and I so desperately want to live. To me, traveling is cathartic, an expression of my soul. I cherish the feeling of awe when I experience new cultures and my curiosity, like a child in wonder.

Social media captivates audiences' attention with its travel videos and articles. However, I don't see many expressions of what it's like for a chronically ill person.

I travel with others who live with chronic illnesses

Traveling, for me, is attempting the perfect balance of fun and rest. Traveling with healthy people can be difficult because unless someone lives with a chronic illness that dictates their lives, they truly don't understand.

Fortunately for me, I have a decent amount of people in my life who also have chronic illnesses. They may not have the same type as I do – as mine is considered rarest of the rare – but we have commonalities, usually something along the lines of body pain, fatigue, joint issues, etc.

Managing energy upon arrival and throughout the trip

When we arrive, whether driving or flying somewhere, I need a day to rest — time to veg out, watch movies, take naps, and stay in. My body needs the break before I can handle more; otherwise, I will go into a flare.

I also need a flexible idea of what we're doing. The plans need to be able to change depending on how my body is feeling that day. It's like my body is a phone battery, and the charger stops working at different amounts each day. I never really know how well my body is charged until I wake up.

Some days, I have a ton of energy, and other days, I desperately need a nap. So, revisions to the plans may need to be made. The length of time I will be traveling determines how many activities I can squeeze in. I usually do one big and one small adventure in a day. I need time to rest daily. If I am gone for a week, I have a day as a veg-out day in the middle of the week.

I take extra precautions with germs around me

I also need to pay attention to my surroundings when I am out and about. I try to avoid large crowds, especially in buildings. I am immunodeficient; healthy people fight everyday illnesses like the cold significantly better and faster than I do. Something as little as a cold can easily turn into pneumonia for me.

I use Purell all the time. I have it in any bag I carry and if I see it in a building, I'll use that one, too. I try to always be prepared for as many situations as I can. I have a little pill container for Tylenol or ibuprofen. And I always have a tiny first aid kit, inhalers, backup antibiotics, and prednisone.

I pay attention to hidden triggers in restaurants and stores

One of my symptoms is allergic reactions and random skin breakouts. I can go to a restaurant, and something in that room may trigger me.  It could be candles, perfume, cologne, the lights, even the air movement. My eyes will water to the point where it looks like I am crying. I will yawn excessively and feel like my energy is drained from my body. I immediately become beyond exhausted.

If I notice it quickly enough and pinpoint the trigger, I can move away from it. Sometimes, I can stop the reactions and continue with what I am doing. I may just need to switch areas of the room or leave all together. I can also have a reaction to a plastic bag from a store, or the chemicals on clothes in a store can cause itchy spots or a chemical burn. Given that I've been living with this for so long, I've gotten pretty good at adjusting, including taking 3 allergy medications daily.

Preparation is key to making travel possible for me

Overall, I try to live my life as normal as possible. I just have to plan and prepare more than others. I still get to explore the world and let my curious inner child out to play.