connected to their bleeding disorder. For example, all teens are in the process of figuring themselves out, and the struggle for independence is something all families with teens are coping with. While you’re at it, don’t allow other adults your child comes into contact with, at school, in the community, in your extended family, to reduce them to a walking and talking bleeding disorder. Creating a positive identity is a daily process.
Avoid the Urge to Catastrophize Let’s face it, you’re a parent. So, it is only natural that when something happens to your child, you feel like it is also happening to you. But what may seem devastating and alarming to you may be something that your child is taking in stride. After all, they are living day to day with their bleeding disorder. So, try to take emotional cues from your child. Sure, be diligent in working with your child to manage their bleeding disorder. As the saying goes, slow and steady wins the race. Set an example for your child by not keeping your finger poised over the panic button.
Encourage Your Child to Do a Self-Inventory In other words, to review their own foundation. Frequently. Sit down together and discuss their accomplishments, skills, the qualities they most value about themselves, the qualities that others value. Make a list together and then pull it out when they have those moments when they aren’t feeling all that great about themselves. This is a great way to help your child take ownership of their identity and understand the connection between taking positive steps toward forming their own personal identity. Keep in mind that self-esteem comes from within, from believing in yourself. So, review the evidence together often. This exercise is, by extension, also a selfesteem builder.
Encourage your child to have a sense of humor Teach them that both kids and adults say things that are not very well thought out, mainly because they aren’t educated about bleeding disorders. And that sometimes the best response is just to reply to a dumb comment with a joke. Olivia could have informed her classmates: “I got bit by a shark. I need to be more careful while swimming.” Again, humor is empowering.
Also talk to your kids about comparing and despairing Kids are in a constant state of comparing themselves to their peers. Help your child to recognize what’s unique about themselves. Sure, their condition sets them apart, but so do other qualities. Teach them that each of us are on our own path, with our own challenges and opportunities. Their peers have challenges, too. Your identity. Your child’s identity. Stay focused on the big picture of life. Embrace all of who you are. If you are a parent, encourage your child to do the same. Avoid labels, especially the “patient” label. Think of your bleeding disorder as a small wedge of a very big pie, that is, only one aspect of your identity. One aspect of your child’s identity. And one aspect of your identity as a parent. We’re all in this together!
Gary McClain, PhD, is a therapist, patient advocate, and author, specializing in helping clients deal with the emotional impact of chronic and life-threatening illnesses, as well as their families and professional caregivers. He works with them to understand and cope with their emotions, to learn about their lifestyle and treatment options, to maintain compliance with medical regimens, to communicate effectively with the medical establishment, to communicate better with other family members, and to listen to their own inner voice as they make decisions about the future. He writes articles for healthcare publications and websites, facilitates discussions in social health communities, and conducts workshops on living with chronic conditions, Chronic Communication Skillssm. He maintains a Website, www.JustGotDiagnosed.com.
FAMILY MATTERS