What Traveling Is Like When You Live With Multiple Chronic Illnesses


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


Find this story helpful? Share it with someone you care about.


Related to Gastroparesis

woman standing on a beach spreading her arms out at sunset

Finding Power When Your Disease Makes You Feel Powerless

Sitting here in gut-wrenching pain, fighting for every prescription and ounce of help, it’s a wonder I have any sense of power or control left in my life. Slowly losing the ability to take care of yourself, eat, drink or use the bathroom can really make a person feel powerless. I’m alive not on my [...]
23 Surprising Physical Symptoms of Gastroparesis

23 Surprising Physical Symptoms of Gastroparesis

Gastroparesis (GP) is a condition that affects stomach motility and causes delayed gastric emptying. Common symptoms may include nausea, vomiting, abdominal pain or weight loss – but though these symptoms may sound similar to a nasty stomach bug, that is certainly not the case. GP is a very complex, lifelong illness that can produce a wide [...]
mom and daughter wearing matching black dresses

The Joys and Fears of Motherhood With Chronic Illness

As Mother’s Day fast approaches, I find myself reflecting on my own role as parent to my 14-year-old daughter, Lilly. I live with a chronic illness, gastroparesis, which leaves no aspect of my life untouched, and, like many in my community, I worry about how my illness impacts my child and sometimes fear it disqualifies [...]
alice hoffman on hike in hawaii

9 Things I Learned About Traveling With Chronic Illness While Planning My Honeymoon

I recently got married. He’s a pretty cool guy, I think I’ll keep him. We decided on a honeymoon in Hawaii. Exciting, right? The excitement was immediately followed by straight-up terror. Something along the lines of “Hawaii?!? Yes! Sun, beaches, more sun! Oh crap. What about food? I don’t eat solid food. So that makes [...]