5 Things I'm Tired of Hearing People Say as Someone With Crohn's Disease

This story was submitted for Girls With Guts by Kristin D’Annunzio

1. “You don’t look sick” or “You look great! You must be better.”

Newsflash: You can’t see my intestines or my colon right now. Just because I put on mascara and dragged myself here, doesn’t mean I’m better. Chronic means forever. Maybe I didn’t already have diarrhea seven times, or maybe my joints aren’t aching quite as much as usual. Or maybe I’m just being brave, because I’m so darn tired of being sick and missing life. I’ve missed Christmas, field trips and birthday parties because of an invisible disease that people think I’m dramatizing.

2. “Ugh, my stomach hurts today. Now I know how you feel every day.”

Do you? Do you, really? You overate at the Super Bowl party and now you feel gross? Guess what? I didn’t eat anything at the Super Bowl party, because if I ate chicken wings, pizza and guacamole, I may end up in the hospital. Seriously. Imagine the worst stomach flu or food poisoning you’ve ever had. Now imagine doing that every day for months, or even years. Still think you know how I feel? Your libido will return, you’ll be five pounds lighter, and you’ll have a beer next Friday night. I will turn my partner down again tomorrow, gain five pounds from prednisone and enjoy some delightful diluted apple juice with my white rice on Friday night. But yeah, you know exactly how I feel.

3. “You should just go gluten-free!”

Celiac disease and Crohn’s disease are two completely different diseases. And yes, maybe a gluten-free diet helps some people. But if you take away my toaster waffles, elbow macaroni and plain bagels, I may wither away. Yes, I can eat rice and Cheerios, but would you be happy with that? I already can’t eat yogurt (or any dairy for that matter), raw veggies or fruits (and I love apples, dammit!), or brownies. Or Doritos. Or McDonald’s hashbrowns. Step off my white pasta. Maybe you’re trying to be helpful and offer advice, but it’s just not that simple.

4. “Get well soon.”

I get it. You’re trying to be nice. But even if I feel “well” tomorrow, I’ll never truly be well. Maybe I’ll be in remission a year from now, but maybe not. And even if I am, this disease will always be lurking, waiting for a weak moment to come back with a vengeance and destroy my plans. And soon? Please. Remission can take months to achieve, if it ever happens. If it does, it probably means I’m taking some sort of immunosuppressant to get there. So if you had a cold three days ago, don’t come knocking on my door. You could send my system into a tailspin. If you want to be supportive, say, “I understand” or “I hope you have a better day tomorrow.” Or ask “How are you feeling?” and actually listen.

5. “We should have dinner!”

Oh, how I would love to jump at the opportunity to gossip and eat mozzarella sticks. Finding something safe to eat at a restaurant is so hard. Burger? No. Quesadilla? Nope. Salad? Hard pass. What’s safe, you ask? Grilled chicken. Baked potatoes. Pancakes. A turkey sandwich (no mayo, no tomato, no lettuce, no cheese. Literally turkey and bread. Yum!) So yes, we should have dinner. But a) I can’t make plans too far ahead because I may feel like death that day and b) It has to be Panera Bread or IHOP. Still want to go out?

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo by ViewApart