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What Traveling Is Like When You Live With Multiple Chronic Illnesses

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Sometimes I try to act normal. It’s not that I want to pretend I’m not sick — I couldn’t even if I tried. It’s more that I want to normalize things for everyone around me. The truth is, I shouldn’t have to.

Vacations are tough for everyone, but when you live with multiple chronic illnesses, and especially one that prevents you from eating at all, you can become self-conscious of your attitude, your appearance, and sometimes, even of your own feelings.

I love my family, and I love traveling. Lately, however, I have realized how tired I become when I do so. Traveling with me means getting to the airport with hours to spare so I can be tripled checked due to my feeding tubes, my medical equipment, and the many medical liquids I need to carry with me. Going on vacation with me also means sitting down constantly when my heart decides to give up for a bit, or taking naps randomly during the day because the fatigue always wins, or even staying in because I can’t leave the bathroom for hours at a time, or even accepting my service dog taking over your space on the plane.

My family knows all of these things, and they accept them. Even more so, they love me because of it. But I don’t love it, and I don’t enjoy these moments when I feel like a burden. I wish I could scream, cry, and sometimes, I even wish for the worse. I don’t mean any of it though, and it’s apparent that it’s all because I’m exhausted. However, I always tend to act like I’m OK, and the truth is, most times, I’m not.

Why is it that we chronically ill people believe it is our fault? Why do we hide our symptoms and feelings so we won’t disturb those around us? I didn’t choose to be sick, and I shouldn’t be ashamed of it. I’ve come to realize that my new “normal” needs to be to speak up when I’m not able to do what others want, and not be ashamed of their reactions, it is theirs to deal with, not me.

For all the chronically ill fighters out there, put yourself first and foremost, because your life depends on it. I will continue to travel with family, but I’ll do so in my own terms, no matter what others may feel. I will feel OK.

Getty Image by eldinhoid

Originally published: June 21, 2018
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