HOW I DID IT is an ongoing series where readers share firsthand experiences living with an ostomy.
To set the scene:
You’re hanging out with a friend. All she seems to be saying is, "Why have you been missing so much school?"
You feel bad she doesn’t know you’ve been sick and really want to make an attempt to explain.
Finally, you decide to tell your friend.
You take a deep breath and begin…
"In 2010, when I was 6-years-old, I was diagnosed with Crohn’s disease and had to have ileostomy surgery in 2012."
Now that I’m 13, I've learned a thing or two about telling people about my illness and ostomy. When I was younger it was easier to tell my friends because I wasn’t as worried that they would judge me. It's fine to tell your friends when you're older, but the conversation might go one of two ways:
Your friends will likely be fine with it and like you for who you are inside, or
They can feel awkward and your friendship won't be as strong.
To help the conversation go well, here are some tips on how to tell friends about your ostomy.
1. Be Prepared
I usually go to websites like The Great Bowel Movement, Crohn's & Colitis Foundation or United Ostomy Associations of America. These organizations have a lot of great information where I get ideas on how to explain IBD and ostomies. I don't plan out word for word what I say, but I think it's a good idea to know as much about your illness and ostomy as possible, just in case your friend starts asking questions. You should only share things about your illness when you feel comfortable.
2. Make Sure You Have Their Trust
Some of my friends have been there with me from the beginning and already know about my illness. But if you've only known your friend a short time, it might be best to hold off so you can establish some trust. One time I had a pen pal, and I wrote to her a letter about Crohn’s disease and my ileostomy. That helped me by putting my thoughts on paper. Don't feel like you’re lying to your friends when you don't share things about your condition, or feel bad that you’re hiding something if they ever ask, "What's your biggest secret?" A fellow ostomate told me there’s a difference between keeping things secret and being private. It's your choice whether you want to talk openly about your ostomy or not.
3. Be Confident
You might feel like you don't have confidence because you think your friends might feel disappointed and betrayed that don’t know about your ostomy. As I got older, I was actually less confident in telling my friends. I would try to start a conversation, but wouldn't have enough confidence to finish. Sometimes I get upset and nervous that it won't go well. One way to feel confident is by simply telling yourself that bad reactions won't happen. I've had many successful conversations and I'm still friends with the people I've told. Every now and then I need an extra boost of confidence before telling someone.
4. It’s All About How You Talk To Your Friend
First, I make a promise with them that they won't tell anybody else. I don't want my friends telling their friends, especially if those kids don't really know enough about IBD or ostomies to understand. Then, I explain the surgery in a way that young kids understand. For example, instead of saying "my colon was inflamed," I will say something like, "my large intestine was swollen." Both mean basically the same thing, just different wording.
5. Humor Helps
It's good to add some humor to your conversation so your friends know that having an ostomy is not all serious. The noises stomas make can be funny, so if your conversation gets awkward, sometimes the best thing is laughter. Humor helps me talk about my illness and cope with it. Your sense of humor also helps bring back some joy into your life.
My life with an ostomy and Crohn’s disease has changed me in ways I could not have imagined. I’ve learned more about my disease and how to handle it. I also feel more confident with things that I used to be afraid of (like needles). Having an ostomy might be weird at first, but then it becomes second nature. It can be the most horrible thing in the world OR it can be the most awesomest, coolest thing ever… it’s all about how you think. I personally like the second option, even though ostomy life has its challenges. I get frustrated having leaks or checking my bag a lot before going swimming, but that’s ok. I hope this helps kids with an ostomy feel like they’re not alone and that there are other young ostomates going through similar things.