How do I tell my friends and family about my child’s Crohn’s Disease or Ulcerative Colitis?

How do I tell my friends and family about my child’s Crohn’s Disease or Ulcerative Colitis?

By: Justin Vandergrift

I remember like it was yesterday. A ‘routine’ 45 minute double scope (endoscopy and colonoscopy) turned into nearly two hours. My daughter’s doctor asked us to walk down the hallway into one of those little family rooms. Just a few hours before I remember walking pass the exact room and thinking – I wonder what goes on in there. Within a few minutes I was going to find out. Hearing the news your child has IBD takes your breath away. After the initial shock there are the decisions on who needs to know and what do they need to know. For most of us telling someone about IBD involves more than just the diagnosis, it involves educating them as well.

Breaking the news

The hardest part of me of telling others about IBD was how to explain it. So how can you tell people about your child’s IBD? The first question to answer is what do you want them to know to begin with – start the conversation with the end in mind. For us it was a stepping stone solution, I could not hit them with everything at one time. The first conversation revolved around the diagnosis itself and a slight education on what it meant.

What do they need to know?

Because IBD relates to the GI tract there are very touchy subjects involved. Your friends and family might not need to know every detail. There is no need to share everything, remember what you share will most likely get repeated to others. Your ‘confidential’ conversation with a parent might find its way to your child’s classmates at school. The intimate details of the disease might resurface for your child in a less than trusting environment. So you might not need to share that your child’s fistula with everyone. I found that disease specifics were WAY too much for others to handle. A simple autoimmune disease and creates inflammation in the GI tract was often all they got. What they needed to know was that my child was in chronic pain and was a strong little girl.

Educate in stages

As we learned more we educated more. Information was provided to the family in stages with the goal that her care with them would look very similar to her care with us. A sleep over at the grandparents should reflect the same routine and diet she had here – without exception. There are wonderful resources for educating others available through the CCFA. Contact your local CCFA office and take advantage of these free handouts. Often your doctor’s office will have a supply of them as well.

Comments from others that tick me off

There are times when your heart is breaking and you get those amazing questions and statements from others. Listed below are a few of my favorite statements and questions I have heard. I added them for amusement only – sometimes laughter is the best medicine.

My stomach is a little tricky too

(What was going on in my mind: Well your stomach is messed up because you eat crap and you deserve it.  My little girl did nothing to deserve this.)

Have you tried eating this?

(What was going on in my mind: Don’t you think we have tried everything to stop her from feeling like this?)

It is all the stuff that is in our food now.

(What was going on in my mind: What do you want me to do with that?)

Uncle Willie had that 40 years ago and was just miserable.

(What was going on in my mind: If I had a bat I would hit you in the head you insensitive little man.)

Be careful with all those medicines you are giving her.  She is so tiny.

(What was going on in my mind: Please quit talking, your ignorance might rub off on those around you.)

Have you tried this supplement or shake?

(What was going on in my mind: How much do you make for selling it to me?)

My dog had Crohn’s and died.

(What was going on in my mind: Oh really, why are you telling me this and why are you comparing my child to a dog?)

We have all heard the same questions over and over – you are not alone. The best advice is to simply move through, ignore them and move away. We would love to hear those little gems you have heard from others too.

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