CROHN’S VOICES
When I was invited to speak about Crohn’s disease with a high school health class, I asked the members of the online Crohn’s and ulcerative colitis support group I belong to what they thought kids who might never even have heard of Inflammatory Bowel Disease should know.
Here's what they had to say:
- It’s only embarrassing until you get it. Then you just want someone to help you feel better.
- If I had the guts (pun intended) I would tell my classmates that yes, I am sick. Yes, my disease takes a lot from me.However, pity is the last thing I want. We all may look healthy on the outside. But we’re dying on the inside. Never assume people are faking their pain just because you can’t see it.
- Living with IBD does not define who you are. When I was in school, I played sports, worked, and made amazing grades all while living and dealing with Crohn’s.
- It sucks having to go through it, but it sucks even worse when your friends shun you for something they don’t understand.
- Please don’t make fun of my moon face. I lost all my friends over them making fun of my face. I needed some friends to take my mind off of it. And don’t ask about it. Just be there for us and help make us laugh or do some activities we could do, like a movie night.
- Never say well, you do not look sick and I know some things that will cure you and I wish I was as thin as you.
- Every single person has some kind of struggle, be it poverty, a chronic illness,or parental troubles. So the next time I look sick or miss school, don’t look at me like a wounded puppy. Instead, treat me as you would treat yourself when you face a struggle. That way, we can get through all the messed up parts of life and enjoy all the best parts of life together, rather than as the ‘normal friend’ and the ‘sick friend.’
- Don’t skimp on the toilet paper. lol.
- I was bullied for being anorexic. I just knew I couldn’t eat at school because of the pain and I wouldn’t have time to go to the bathroom if I had to wait on a teacher’s permission.
- Don’t be afraid to let your peers know what you’re going through. It’ll make things easier if you’re not having a great day.You’d be surprised how many people are understanding of what we are dealing with even if they aren’t exactly sure what IBD is.
- Kids need to know that if they have pain, they should let someone know. We are never alone.
- When we tell you that we have Crohn’s don’t give us that snarling nose in the air like we were nasty.
- Do not judge someone because they look healthy. They may be fighting for their life while their body is attacking their insides. Just because someone looks healthy doesn’t mean they are not in pain or dying.
- People with IBD can look good on the outside and still be sick on the inside.We don’t like to be treated like we are about to break in half. We like to treated just like everyone else. We know our limitations.
- I remember telling my best friend that my stomach hurt too bad to stand up straight in choir class and she told me that it was all in my head and that I said the same thing every day.
- I think just bringing awareness is huge.
- If we ask to cut in line at the bathroom, please be gracious and allow us to.
- Most kids may laugh, not pay attention, or whatever, but there may just be someone out there listening and figuring out that they may have this disease. Maybe they’ve suffered from the symptoms and just didn’t know what it was and didn’t feel comfortable talking about it.
- Understand that when we say we can’t/won’t/don’t want to go out that we may have a good reason. Offer to stay in. Don’t get mad.
- Life is a big mess. There are so many things we don’t understand and can’t plan for. The best thing to do is to learn to laugh, show compassion, and be supportive with everything in life, not just with illnesses.
- If you can somehow help find the funny side, or lend a smile . . .
- It’s not contagious.
- The meds are as deadly as the disease.
- We have the same dreams and ambitions as everyone else. But can remember where every restroom is for a hundred mile radius. lol.
- Stop asking us for our due dates. lol. We’re not pregnant. Just extremely swollen and bloated.
- We may not have cancer, but we still suffer physically and emotionally.
- No cure for our disease equals a lifetime sentence of pain. But we never, ever give up.
- Be kind. Pretend not to hear the gas I am passing while struggling so hard not to! Don’t comment on the length of time I spend in the restroom.
- We are the walking wounded. Outside I look fine, but inside I’m in so much pain I feel like chewing all my limbs off. Where’s a wall? I gotta bang my head against it!
- There are all kinds of struggles in this life and no one person’s struggle is greater than another. Try to understand as many things as possible. Be tolerant and kind.
- I was ashamed of my symptoms and my parents kept saying it was my nerves. It hasn’t defeated me.
- I overcame it because of Jesus.
- Don’t tell a Crohnie how to eat right. Cuz everybody is not the same with this disease.
- It's a chronic illness with no cure. And dietary triggers are different for every person suffering.
- We share the struggle that only others with a humiliating poop condition can comprehend.
- Once you have experienced something like Crohn's or UC, you no longer look at people the same way.
- The person who is stick thin could be someone who feels nauseated even at the smell of food. That heavy set person may be taking a drug that allows them to live, while also making them put on weight. The person who looks like they have it all together, may be hiding extreme pain under that smile.
- It may knock me down, but I get right back up again.