In a perfect world, everyone would be knowledgeable, understanding and supportive about your child’s bleeding disorder.
In the real world, unfortunately, that isn’t always the case. Maybe there’s an uncle who continually roughhouses with your child. Perhaps a friend or relative routinely gives you unsolicited parenting advice that’s off the mark—and potentially dangerous. Or maybe it’s a neighbor who treats your child with pity and tells her own child that he should feel sorry for yours because of his bleeding disorder.
Dealing with these unhelpful or difficult people can try your patience and cause friction in your relationships. What’s the best way to cope? Keep these tips in mind:
1. Don’t assume family knows the drill
“Sometimes we take it for granted that members of our family will always know what they should and shouldn’t do if a child has a bleeding disorder, but that’s not always the case,” says Cathy Tiggs, MSSA, LISW, adult and pediatric social worker at University Hospitals Cleveland Medical Center.
So if a family member is being reckless or otherwise doing something that could be harmful to a child with a bleeding disorder, the solution is to educate him the same way you’d talk to someone who was meeting your child for the first time.
“It might be best to not address the issue right after you see your relative playing rough with your child, as the adult might be more open to the conversation during a separate time and space,” says Lisa Littner, MSW, LISW-S, hemophilia grants manager and a former social worker at the hemophilia treatment center at Cincinnati Children’s Hospital. “It’s better to wait to talk either over the phone or in person at a time when you think he would be most receptive to having the conversation.”
Your child’s hemophilia treatment team can also be a resource. “Many nurse coordinators are more than happy to make time to talk to family members to answer questions,” Littner says.
2. Start on a positive note
Whether you’re talking to someone who’s not being safe or who’s walking on eggshells and pitying your child, it’s best to begin by emphasizing something positive. “So, if your brother-in-law is playing too rough, you could start out by saying you’re grateful that he likes to play with your son, and you know your son enjoys playing with him too,” Littner advises. From there, you can explain why playing rough can be dangerous and provide examples of other activities that your son could do with his uncle.
In the case of a neighbor who feels sorry for your child and treats him with pity, you could start by telling her you appreciate how thoughtful and careful she is, Littner says. “Then, you could remind her that even though your child has a bleeding disorder, it doesn’t define them and they’re living a normal life,” she says.
3. Use “I” instead of “You”
When talking to friends and relatives, using “I” statements instead of “you” statements can make a conversation more positive and less tinged with blame. “Starting a sentence with ‘I feel’ or ‘I need or want’ can really help two people in a conversation relate to each other more and ultimately lead to a shared perspective,” Littner says.
For example, if a close friend or relative is in the habit of sharing incorrect information about bleeding disorders on social media, you could say, “I understand that you would like more people to understand my child’s bleeding disorder, but not all of the information that you are sharing is the same as what my son’s hemophilia treatment center has given us about his diagnosis and treatment. Would you mind if I emailed you some information?”
4. Validate the other person’s feelings
If people are giving you unsolicited advice, hear them out and acknowledge where they are coming from, even though you don’t agree with what they are saying. “You can say, ‘I can see why you think that or why you would recommend that,’” Littner says. You can gently remind them that you are working with your child’s medical team to provide him with the best care for his bleeding disorder and that you prefer to stick with the team’s recommendations.
No matter who you’re dealing with, if you assume the person has good intentions, it can help you handle the situation better. “Try to remind yourself that everyone wants the best for your child—they want him to grow and thrive and be as normal as he’s able to be,” Tiggs says.