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7 Misconceptions About My Chronic Illness I Heard in the Office

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May is Inflammatory Bowel Disease (IBD) Awareness Month. In the summer of 2002, I was diagnosed with an IBD, Crohn’s disease. Over the years, I have been on the receiving end of many a comment that I’ve perceived as insensitive or uncaring. I now realize some of these comments were born out of ignorance and misinformation. I also like to believe I can find little glimmers of caring and concern in these comments. I admit some are harder to swallow than others.

I share the following, not as a suggestion that we all become IBD experts because that is not realistic. I share in hopes that we can look at a bigger picture, and have conscious awareness — conscious awareness of the words we use and the actions we take. Maybe if before we speak or act, we paused to ask ourselves, “How will my words and actions serve?” we might learn all we need to know.

That summer, I found myself in the bathroom, a lot. I knew something wasn’t right, and I did my best to deal with it. As the weeks passed, the ripping lower abdominal pain, indescribable fatigue, swollen eyes and big purple welts on my shins increased. My mouth filled with ulcers that made talking painful. I started walking slowly and cautiously because I thought I had broken bones in my feet. My coworkers zeroed in on my “unexplained” weight loss. I became aware of the gossip mill speculations: that maybe I had an eating disorder and/or a drug problem.

These are seven misconceptions I’ve heard since my diagnosis, and what my reality was actually like:

1) When I finally received the name of my pain, I shared my diagnosis with my officemates. One of them said, “I wish I had Crohn’s, just for a week though, then maybe I could lose some weight too.” Did she really believe that I should feel lucky? Lucky that because of Crohn’s, I could eat anything I wanted and still lose weight?

Fact: It doesn’t work that way; it actually hurt to drink water.

2) When I was put on prednisone and started to gain weight, another coworker told me, “Never lose that much weight again, you looked terrible.”

Fact: I didn’t cause this. I didn’t do it on purpose.

3) In an attempt to restore some normalcy and enjoy a moment of remission, I eased up on the dietary restrictions I had placed on myself and started bringing raw vegetables in my lunch again. This simple act brought out everyone’s inner judge, jury and executioner. I heard statements like, “Should you be eating that?” and “Don’t you think those vegetables will rip you up?” I even heard, “Maybe that’s why you got Crohn’s in the first place.”

Fact: Diet is not a cause of Crohn’s. However, certain foods may be aggravating when the disease is active.

4) Crohn’s disease has preferred my colon as its point of attack. I have yet to have small bowel involvement. And as a result, I have been told, “If you’re gonna have Crohn’s disease, Crohn’s of the colon is the one you want.” Was that supposed to make me feel better — or guilty?

Fact: My experience with Crohn’s is not better or worse than anyone else’s; it is different.

5) My favorite, “I thought people with Crohn’s were skinny.” My last Crohn’s flare and round of prednisone left me utterly exhausted. I gradually gained 20 extra pounds.

Fact: No, the prednisone induced weight gain doesn’t “just disappear’”when you stop taking the drug.

6) Not everyone with Crohn’s will experience the joint pain. When mine acts up, my lower back is on fire. I cannot find a comfortable position and will vacillate between sitting and standing. Once, someone insisted that I sit. When I said, “No thank you, it hurts to sit.” I was met with a fiery retort, “You’re not the only one with pain!” Wow.

Fact: I am fully aware that someone else “has it worse” than I do. Minimizing my pain will only increase it.

7) Recently, a colleague suggested that maybe I really didn’t have Crohn’s because, wait for it… I don’t look sick.

Fact: While I am not in a flare right now, Crohn’s didn’t “go away.” It’s called remission.

It is important to remember that our words have amazing powers. Here are a few suggestions for navigating the waters of conversation from one of my favorite books, “Dancing with the Ten Thousand Things,” by Tom Balles:

Become a better listener: Do your best to listen without thinking what you are going to say in response. Resist the urge to fix, recommend, or suggest. Let your listening shape their speaking.

Ask open-ended questions: Asking, “What’s going on?” will encourage someone to open up more than asking the question, “Are you OK?”

Create partnership: Ask your chronically ill friend or coworker for specific ways that you might become a better partner (what helps them laugh, what motivates them in moments of discouragement).  Adopt and act on their answer for the sake of the relationship.

The Mighty is asking the following: Tell us a story about a time you encountered a commonly held misconception about you or a loved one’s disability or illness. How did you react, and what do you want to tell people who hold his misconception? Check out our Submit a Story page for more about our submission guidelines.

Originally published: May 13, 2016
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