When your child has a bleeding disorder, it’s natural to want to caution them about the risks involved with their condition. But the words you use when you talk to your child about their bleeding disorder can have a big impact on how they view themselves, says Jamie DeMaagd, LMSW, a pediatric coagulation disorder social worker at Helen DeVos Children’s Hospital in Grand Rapids, Michigan.
“Parents help set the tone for the balance that can be achieved between honoring the limitations of living with a bleeding disorder and fully embracing the nearly endless interests and hobbies our patients can participate in,” DeMaagd says.
Why Language Matters When Your Child Has a Bleeding Disorder
DeMaagd says parents and caregivers often focus on telling kids what they shouldn’t do because it’s too risky and might cause a bleed. That instinct comes from love and concern, she says, but when the emphasis is mostly on “no” and “don’t,” children may absorb the idea that they are fragile above all else.
In reality, with the right planning and support, there are a wide range of activities that kids with bleeding disorders can participate in.
“The most well-adjusted children we see come through our hemophilia treatment center tend to be those whose families have leaned into what their child can do and celebrate those interests,” DeMaagd says.
“Additionally, when parents and staff encourage children to share their accomplishments themselves, it creates a space for celebration,” she says.
Phrases to Avoid: What Not to Say to Your Child
Some common, well-meaning phrases can unintentionally send the wrong message.
Here are a few DeMaagd says to watch out for:
- “Your blood is sick.” Parents often use simple words to explain a complex condition. But for kids, “sick” usually means something short term, like the flu, and can feel like a judgment about who they are. It risks telling them that they are their illness, rather than a whole person who happens to have a bleeding disorder.
- “You could bleed out.” This usually comes from a place of fear, especially in families who’ve witnessed serious bleeds. But most injuries are not catastrophic, and with today’s treatments, many bleeds can be medically managed without imminent risk of death. Dramatic language can amplify anxiety and leave a child feeling constantly unsafe.
- “This is why you shouldn’t do ____.” Said in the heat of the moment, after a risky choice leads to a bleed, this kind of statement may teach a child to hide injuries rather than ask for help. If a child expects anger or “I told you so,” they may delay coming to you when they need you most.
What to Say Instead: Confidence-Building Comments
You don’t have to memorize a script, but a few simple shifts in mindset can help make your everyday conversations more uplifting and empowering. Here’s what DeMaagd recommends:
- Put your child before the diagnosis. Instead of saying “you’re sick” or “your blood is sick,” try a concrete explanation that keeps the focus on them as a whole person. “For example, you might say, ‘You’re a kid who’s missing one of the building blocks or dominoes that help blood clot, and you take medicine to help those missing pieces work better,’” DeMaagd says.
- Highlight your child’s growing skills. You can remind your child that they’re an expert on their own body and an active partner in their own care by saying things like, “You know your body so well! How did you first notice that your knee was bothering you?” and “We’re so proud of how you manage your hemophilia.”
- Celebrate all that they can do. When you focus on the positive, you’re sending a powerful message to your child. For example, “You are more than your bleeding disorder. We see your strengths, your friendships, your courage,” she says.
DeMaagd says that when she meets with parents and kids during comprehensive clinic visits, these are some of the phrases she hears from parents whose children demonstrate a lot of confidence:
- “Tell them about your swimming lessons this summer!”
- “You recently had a solo music competition. Tell them about how you scored!”
- “You went to camp for the first time. Tell them about the friends you made and all the cool activities you did!”
Honoring Both the Good Days — and the Hard Ones
At the same time, it’s important not to completely skip over the hard parts, DeMaagd notes. “We never want to launch into ‘but look at all the things you can do’ without also allowing time for them to talk about their grief over the things that may no longer be options for them,” she says.
“Children, families, and HTC staff alike must continually work to balance the highs and lows of living with a bleeding disorder — honoring the ‘lows’ and celebrating the ‘highs.’”