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What We Say About Illness - and what it says about us!

I thought that sitting down would help, but even after I settled onto the chorus bench on stage, I was still light headed and sweating more than I should have been on the late summer day. Our chorus manager saw me with my head between my legs and came through the stage right door to help me off the risers and off stage into a chair.

I had been so sick for so long that I didn’t have the energy to be embarrassed. The chorus manager looked at me, pale and slumped low in the chair backstage, 15 or 20 pounds lighter than the last time he’d seen me, with thinner hair and darker circles around my eyes, and was concerned. “Are you OK?”

What to say? There was no reason to alarm him, and there was little he could do. My Crohn’s had been flaring, I was malnourished and anemic even when I wasn’t in terrible pain. This bought of lightheadedness, frightening and unusual to those who don’t live with a digestive disease, was commonplace. I waved my hand as I looked for the words to answer his question. “I have a chronic illness.”

You only get one chance to convince a person that your disease doesn’t define you, so I agonize over what to say about having an Inflammatory Bowel Disease. (It’s worth noting that you only get one chance to respond to such an admission as well. I will never forget when someone screeched “Is that contagious??” and leapt to the other side of the room when I mentioned my illness. And I will likely never forgive either.)

I don’t like to say Crohn’s disease for the simple reason that most people hear it and think it has to do with crones. IBD sounds too much like IBS. Chronic illness sounds so ominous. Digestive disease isn’t bad, but oversimplifies the constellation of symptoms that wrack my body during flares down to something as simple as digestion.

Once in a while, when someone learns of my illness and asks more about it in a compassionate way, I share with them my “elevator speech”, the short explanation of Crohn’s in my life.

“Crohn’s is an autoimmune disease, which means my immune system goes crazy and attacks my intestine. This causes periods of inflammation and pain. Sometimes I get really fatigued, and sometimes I have trouble eating. I developed it when I was thirty and started throwing up all the time. There’s no cure but lots of tactics for managing it.”

When I started thinking about my elevator pitch, I realized that a lot of what I said wasn’t just about informing people about my illness, but about controlling the way that they perceive me. Here’s what my speech is code for.

Autoimmune disease: In other words, it’s not about me having a crappy diet, so don’t judge me.

Attacks my intestine: Not my stomach. It’s not an ulcer, and it’s not nerves or butterflies. It’s way downstream from my stomach.

Inflammation and pain: I have to be way tougher than I ever thought I’d have to be to get through the day.

Fatigue: I know I don’t look sick, but there are days when I can barely drag myself out of bed, and days when I can’t drag myself out of bed at all. I’m not lazy, I’m sick.

Trouble eating: Don’t take it personally if I don’t eat very much. Do not praise my weight loss. Do not comment on my eating habits.

Developed it when I was thirty: this is a big one. For some reason it is very important for me to let people know that I wasn’t always sick. I think part of me resents that they think it could never happen to them, which is an ugly but honest emotion to admit. I really want people to know that I was very healthy and had very good habits and this came out of nowhere.

Throwing up all the time: I don’t get the poops, which is what most people automatically think when they hear Crohn’s, if they know anything about it at all.

My elevator speech changes depending on how I am feeling and my audience. Lately I have had to work in a section on my recent surgery, temporary ostomy, remission and possibility of relapse. One thing that stays the same is that I choose my words carefully so that I avoid misunderstanding or negative judgments.

How do you talk about your illness? What would people learn if they read between the lines?

Margaret Felice is a singer, religious educator, choral conductor and blogger who lives in Boston. During four months in 2015 she endured two surgeries, purchasing and moving into a new condo, planning her recent wedding, and seven feet of snow. Her music and her writing can be found at www.margaretfelice.com, or you can find her on Facebook (www.facebook.com/MargaretAFelice) or Twitter (www.twitter.com/margaretfelice).