Close your eyes for a moment and think back to what life was like at age 13. Think about the highs, the lows and everything in between. Now imagine going through all that while battling an invisible illness that your peers in school, friends, family and teachers may not know about.
I recently received an email from a dad with a teenager who battles Crohn’s. They wish to remain anonymous—but their story is easy to relate to.
He was diagnosed with Crohn’s disease when he was 8 years old. Now, as a teenager he’s no stranger to how debilitating and exhausting the illness can be. Sadly, the disease has robbed him of the healthy and carefree childhood most kids are afforded.
“Children are God’s blessing, but we hurt when they hurt. I’m an ex Green Beret, but he’s the bravest, and toughest person I’ve ever met. My mom had autoimmune disease, so I thought I knew this drill, but I was just so stunned by this. I could never have imagined the pain and embarrassment and issues my son faces. But, he’s usually laughing and smiling,” said the father.
As an eighth grader, between dealing with side effects of medication and the need for frequent bathroom breaks, there’s a real struggle to find ‘normalcy’ in the classroom. He said it’s heartbreaking to see his son with a genius IQ struggle to be a part of school and extracurricular activities.
“This school year has been difficult. So much change, so much worry. One teacher was reporting him as tardy unexcused even when he had to run to the bathroom, and he was suddenly threatened with suspension. Imagine cleaning up after a bout, trying to knock down the nausea and pain, and to make it on time to school. It’s very difficult to make school practices, for him to ride a bus, and to endure the social issues (bathroom issues) in today’s zero tolerance school world. We found success in getting a medical letter in his file and working with the school front office. However, schools are just not set up to deal with this well.”
I’m told teachers and students seem to “get it” when prednisone causes his cheeks to become puffy or when he drops close to 20 pounds from his inability to eat and get nourishment, but what’s a person to do when they’re in remission and there are no physical signs that set you apart from the rest? THIS is when communicating with those around you is most important, because unless you speak up, educate others and make sure your voice is heard…you’ll be forced to suffer in silence.
As a new mom who has Crohn’s—here are five tips for families with kids battling IBD.
- Share your story.
Rather than staying hush hush and worrying that people will think differently of you. Share your story with humor and positivity. Yes, everyone knows having a disease isn’t something to be taken lightly—but attitude is everything. If you come off honest and lighthearted, that’s how you will be received by others. Let those in your circle know when and how you were diagnosed and the challenges you face on a daily basis so it becomes clear that living with Crohn’s is not a walk in the park.
- Educate the educators
At the beginning of the school year meet with teachers, the school nurse and the school psychologist to discuss setting up a 504 plan and explaining what your child endures on a daily basis. Since being diagnosed myself in 2005, I’ve found unless someone is a medical professional or has a family member or friend with Crohn’s, they have no idea what it is. Include the physical education teacher as there are days when the pain and fatigue may keep kids on the sidelines. You want an understanding in place, so your child isn’t reprimanded for no reason or stuck in an embarrassing situation.
- Connect with other families who “get it.”
Reach out to your local CCFA chapter and find other local families who are going through the same journey as you are. There is nothing better than meeting those who understand what you are going through. There is a great network of people in the real world and the cyber world who are wanting to connect, share stories, discuss medications, etc. It’s reassuring and comforting to talk to someone about how their bowel resection surgery went or how Humira works for them as a management drug. Each year CCFA holds Camp Oasis around the country. The camp features counselors and kids who battle IBD. It’s the perfect way to see firsthand that you are not alone in your struggles as a youngster with the disease… and have fun at the same time!
- Take time to be patient and listen.
IBD can be very isolating and daunting. It’s a big disease for little people to have to come to grips with. Instead of making them ‘feel sick’ by constantly asking them how they’re feeling and not allowing them to do certain activities or eat certain foods—let them spread their wings and try. Those with IBD quickly learn their limits. Be a motivator, rather than a hindrance. If your child says they are too sick to go to school, a family party or their soccer game—trust them and don’t question it. Chances are, they are doing all of that in pain many times without you even knowing it.
- Learn from them.
While I can’t fathom what it would be like for my son to be diagnosed with Crohn’s, I can say that your little one who’s going up against a chronic disease with no cure is going to be wise beyond their years. Each set back and flare up will give your child a very mature perspective when it comes to not taking health for granted. As a parent, celebrate their strength. Commemorate their ‘diagnosis’ anniversary by doing something fun, rather than thinking of it as a terrible day in your family’s history. People with IBD (regardless of age) often feel a sense of guilt. That guilt stems from needing to be cared for (sometimes constantly), missing out on events and plans and the cost for receiving care and taking daily medication. Be mindful of your child’s strength, courage and resilience and recognize them for it.
Special thanks to this strong father and son for reaching out to me and inspiring this article. As a new mom, I can’t begin to imagine how difficult it is for all the IBD families out there. To those with other questions/concerns and story ideas, please email me at lightscameracrohns@gmail.com.
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