How To Share Your Bleeding Disorder Story

Telling your friends about your bleeding disorder
Author: Melanie Padgett Powers

You share games and toys with your friends. You share snacks and pizza with your friends. You may even share rides to school or to team practices with your friends. But should you share information about your bleeding disorder?

As you become good friends with another boy or girl, you may decide you want to tell your new friend about your bleeding disorder. It’s your decision who you tell and how much you want to talk about. Here are some tips on what you can say.

Just the Facts

You know more about your bleeding disorder than your friends ever will. Don’t feel like you have to tell them everything. You don’t need to explain how often you infuse or how many trips to the hospital you’ve had. You and your friends may talk about these things later. In the beginning, you can keep it simple.

Ask Others for Advice

If you want to tell your friends but are nervous about what to say, talk to your parents, your teacher or the staff at your hemophilia treatment center. Ask your brothers or sisters—or your friends and the older kids at your bleeding disorders camp this summer—when they told their friends about their bleeding disorder and how they did it.

Here are some examples of things to say to your friend:

  • “I have hemophilia, which just means my blood doesn’t act like your blood. When I cut myself or fall down, it takes me longer to stop bleeding so I have to take special medicine. And sometimes I get nosebleeds, too.”
  • “You know when kids have diabetes and they sometimes have to get shots? Well, it’s like that. My blood needs special medicine to help stop the bleeding.”
  • “It’s not contagious, which means you can’t catch it from me.”

Remember, everyone has something they have to deal with. Some kids have food allergies. Some kids need glasses. Some kids have bleeding disorders. Telling your friend is your choice. You may even find that your friend has something to share with you, too.