Nick and his classmates were talking about different health disorders in his health class, and one of his friends disclosed to Nick that he had ADD. Nick replied, “Well, I have hemophilia.” That was the first and only time Nick divulged his hemophilia diagnosis to a friend.
I have to admit that this bothers me, and it has bothered me for some time. Over the years, I’ve gently nudged him to tell his friends, even if it were only a couple of his closest friends. I thought telling his friends would be a relief to him and that he would feel better – as if a weight had been lifted.
I was recently reading a hemophilia message board and another mom asked this exact question: Should she push her son to disclose it to his friends? Several adult men with hemophilia politely said no. Mothers know that the more you push a preteen child, more often than not, it will only make them dig their heels in and resist even more. Parents also need to remember that disclosure is a personal decision for the child to make. They have to do it on their own terms and on their schedule and, most importantly, when they are comfortable.
I have followed that logic with other things: getting rid of a pacifier, potty training, self-infusion. I have proudly declared my stance on many milestone moments in his childhood: he’ll do it when he’s ready. So why is it so hard for me to take this same position on disclosure?
Whenever I talk with someone that isn’t familiar with Nick’s bleeding disorder, I always share that Nick chooses to keep it to himself. I feel the need to let people know, mostly out of respect for Nick. When I ask him why he doesn’t want to tell his friends, he always says his friends will think differently of him. I don’t know that I ever realized it, but I feel the same way Nick does. When Nick walks into school or walks onto the ball field, I want everyone to think of him just like the rest of the kids. On one occasion, I even made a coach promise me he wouldn’t treat him any differently. Maybe that’s taking it too far, but…
As parents, we are proud of what makes our child different from other kids. We love the fact that they have some quality or trait that makes them stand out, which is exactly the opposite of what our kids want. Nick worries that his friends will not want to be his friend if they know. In a sign that I really am turning into my mother, I give him the standard motherly response: if that’s what they think, then they weren’t a true friend in the first place.
Nick tells me, “I know now that my good friends wouldn’t treat me any differently or feel any differently about me. If something comes up about it, I will tell them, but I’m not going to just tell them out of the blue.” And I’m okay with that. It doesn’t matter that I thought that Nick would feel this big relief by disclosing his condition—it doesn’t mean that he feels that way. I have a really hard time giving up control of hemophilia related issues. But this isn’t my issue to control. He’ll do it when he’s ready.
Tracy, her husband, Lance, and son, Nick, (12 years old) live in Virginia.
*Note: “Infusing Love: A Mom’s View,” is a blog collection of personal opinions and a representation of individuals experiences. While extensive efforts are made to ensure accuracy of the content, the blog entries do not represent HFA or its Board of Directors. The blog is also not intended to be construed as medical advice or the official opinion/position of HFA, its staff, or its Board of Directors. Readers are strongly encouraged to discuss their own medical treatment with their healthcare providers.