As a therapist, I often talk to my clients about how they view themselves, their identity. This topic often leads to more discussion a related topic, self-esteem. Identity, as well as self-esteem, can be big issues for kids living with bleeding disorders, as well as their parents.
Let’s start with a definition of both of these terms. Your identity is basically who you think you are, how you define yourself or, in therapy terms, how you perceive yourself. As you can imagine, how you self-identify has a big impact on how you feel emotionally and how you relate to other people. And as you have most likely experienced, identity for a child with a bleeding disorder can come down to a struggle between identifying as “normal” and identifying as a “patient.”
Now for a quick definition of self-esteem. Self-esteem basically comes down to the value you place on yourself. As such, your self-esteem also has a whole lot to do with how you feel and how you interact with others. Self-esteem is also an issue for kids with bleeding disorders.
The development of both identity and self-esteem begins during childhood. Yet another reason why a child living with a bleeding disorder might find themselves especially challenged as they forge their self-identity.
To get the conversation started, I will give you a couple of examples from my own work.
Who am I? What am I?
Bill walked into the lunchroom at work, and saw a few of his co-workers sitting at a table together. He bought a sandwich and sat down with them. They were laughing and talking about the World Series, which was going to start the next week. Bill was just about to jump into the conversation when one of his co-workers said:
“Bill, you look a little more tired than usual. How are you feeling?”
“I’m fine,” Bill answered. He tried to not to act too annoyed. “I was just about to tell you who I think has the best chance to win this weekend.” And then he did.
That night, he told his wife, Maryann, about what had happened. “Do I have bleeding disorder tattooed on my forehead? And what makes them think I’m tired?” he asked. “Gosh, Maryann, I am holding up my end at the job. So why can’t they get that I live my life pretty much like they do? I’m not an invalid.”
Tommy is thirteen and in junior high. He has been pressing his parents to let him participate in sports. They have discouraged him, out of concern that constant bumps and falls will lead to bleeds. Last week, Tommy pushed harder, and told them he was planning to try out for a team. His parents told him that under no conditions would they allow him to participate in sports.
“I can’t stand this,” Tommy said to them. “I’m just trying to be like everybody else and have some fun and you are treating like I’m sick or weak or something. Are you going to wrap me in bubble wrap so that the other guys to know I can’t handle myself?”
Olivia’s parents had a similar experience. She is in the fifth grade, and recently had a bleeding episode at school and had to miss a few days. When she returned, some of the other kids had questions that weren’t comfortable for her to answer. A few weren’t so kind.
“My teacher asked me in front of everybody if I wanted to stay in during recess. Now everybody thinks I am sick or something. I just want to be normal like everybody else.”
And let’s not forget that parents also have struggle with questions about identity. First, they are often concerned about their children, whether as parents they are doing everything they need to do to help their children have a healthy sense of themselves, to feel capable and empowered, and not to adopt an identity as a “patient.”
It is also human nature for the parent of a child with a bleeding disorder to have questions about their own identities. To view also themselves as “normal” parents. With a day-to-day life that is similar to other families around them, sharing the same financial concerns, routines, goals and dreams, able to take an active role at school and in their communities. Yet, as parents of a child with a bleeding disorder, they have unique concerns and responsibilities that cause their lives to be very different in many ways.
And as I stated earlier, how you think of yourself has a direct connection to how you feel about yourself. Again, the relationship between identity and self-esteem.
Having a strong sense of our own identify is a task for adults, and parents, as well as children.
Maintaining Your Identify
Here are some ideas for exercising your own identity muscles:
Review your own foundation. Most likely, you have days when you ask yourself questions like “Do I know what the heck I’m supposed to be doing?” and “Am I any good at all at wearing all these hats?” This might be a good time to do a self-inventory. Think about: Your support network. Your healthcare team. Your ability to make good decisions when you’re faced with a challenge. Your inner resilience. The circumstances of life don’t have to lead to an identity crisis when you have a strong foundation. Your foundation is what’s real. It’s what you have to fall back on if things don’t go the way you want them to. Also keep in mind: If you are a parent, having a clear connection to your own foundation helps you to be there for your children, and also sets an empowered example for them.
Get support. Get connected with people who can listen without judging you or trying to tell you how you should feel. Including other people in the bleeding disorder community. Share your experiences. If you’re feeling like your identity is increasingly shaky, you might also want to schedule some time with a mental health professional to talk it out and learn some new coping techniques.
Look for the lesson. When something doesn’t go as you had hoped, look at this as an opportunity to learn. Learning experiences can include how you felt, and coped, with insensitivity at work, like Bill did, or the experiences of Olivia and Tommy and their parents. Remember the lesson so you can apply it in the future. Experience is the best teacher. While you’re at it, be willing to be the first to apologize.
Love yourself. Every day. Show yourself some kindness. Make sure you are building something you enjoy into each day. Along with people to enjoy it with. Remind yourself of what’s good in your life. Give yourself some words of encouragement.
Have a sense of humor. It helps to be able to turn a frustrating situation into a humorous one. You can do this by being willing to look beyond your initial reactions and find the humor. For example, with a smile, Bill might have said to his co-workers: “Bring the stretcher. While I recover, I’ll give you all lots of moral support while you finish up the work.” And then, he could have changed the subject back to the world series. Humor is empowering!
Give yourself a break. Ask that voice of kindness for a little pep talk. Remind yourself: “I’m human. I’m trying hard. This is not an easy road. And I doing the best I can, even if not everything I do is perfect.” Having trouble conjuring up that voice? It might help to sit down with a sheet of paper and do some journaling. Give yourself a positive self-talk script you can read when you need a lift. Try some affirmations. Start out with: “I am a work in progress. I get better every day.” While you’re at it, why not give your self-esteem a boost?
Beware: compare and despair. It’s only human nature to compare ourselves to others. But when we do that, we set ourselves up to come up short. There’s always somebody who, at least on the surface, seems to be doing a little better than you are. Sure, you’re living with a bleeding disorder and they’re not. And yes, absolutely, life is not fair. We’re all on our own unique path in life. Focus your attention on your path, that’s the way to success.
Helping Your Child to Have a Positive Identity
Parents can have a profound impact on the development of their children’s identity. Yes, I know this sounds like a pretty big job. Here are some ideas to help you:
Encourage involvement in decision-making. Children with bleeding disorders often feel as if they are bound by limitations, which can contribute to the feeling they are being labeled a patient and not a whole person. Provide your child with a sense of control through, where possible, allowing for some choices in daily routines, in diet, and in self-care. Explain the options and the boundaries, share information, and listen to your child’s concerns and preferences. Where possible, come to decisions together. Doing this will help your child to integrate their bleeding disorder self-care into their daily life, in a way that supports your child’s other self-determined interests and priorities. Knowledge is power!
Teach all children to be advocates. Children with bleeding disorders need to learn to speak up for themselves so that teachers and other adults outside the home are aware of any needs and limitations. They also need to learn to deal with the questions and comments that will inevitably come their way, as do their brothers and sisters. Teach your chronically-ill child how to be a self-advocate through role-playing at home. By doing this, you are also teaching your child to make it clear to others who they are as people and how they want to be thought of. How’s that for an identity builder? Being an advocate reinforces your child’s self-esteem.
Remember that not everything is a medical issue. Children are human beings, not medical conditions, and communications don’t all have to revolve around your child’s chronic condition. Lots of the issues that come up with kids and teens are developmental. Maintain your perspective on your child as a whole person. Avoid falling into the trap of assuming that everything that happens to them is somehow 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 you 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 self-esteem 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 in the swimming pool.” 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 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!
Dr. 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 Skills (sm). He maintains a Website, www.JustGotDiagnosed.com.