More Than Illness: Helping Your Child Develop Their Identity

 A child’s illness can take over a family’s life and become each member’s identity. This is especially true for the child. Before you know it, their medical condition is all anyone thinks or talks about. But developing a strong, well-rounded identity is very important for kids’ development and emotional health. Parents and caregivers play a major role in making this happen. And while this is harder when your child has cancer or another serious illness, there is still plenty you can do to help.

How to Help Your Child Form an Identity Outside Their Illness

Many people, no matter their age, struggle to separate themselves from their illness. And childhood is an especially vulnerable time. Children, particularly teens, must figure out who they are and where in the world they stand.

To form an identity, children work to answer three basic questions: “Who am I?”; “Am I normal?”; and “How do I fit in?”. Having cancer or another illness makes this difficult. They may begin to believe they can’t be normal and won’t ever be like their classmates and friends.

Fortunately, you can do so much to help them identify as more than their illness. By shrinking the negative impact of their condition and building up positive inputs, you’ll guide your child towards embracing their full self.

After all, even though their illness may feel like it takes over their life, it does not define them. They are simultaneously unique and “normal”, just like everyone else!

Recognize Their Strengths and Achievements

One of the first, and most important, steps to helping kids form a healthy identity is to help build their self-esteem by recognizing their strengths, gifts and achievements. Often the focus is put on milestones in their treatment, but they have so many other things going for them.

The most obvious way to do this is to call out their accomplishments throughout the year. Did they do well on a school assignment? Achieve a personal goal? Since major events only happens sometimes, it’s important to focus on the little things as well. For example, did they clean their room unprompted? Help their sibling out?

Another great option is to point out the things that make them unique. You can praise their kindness, creativity or video game skills. All of these are good ways to help them start to figure out who they are.

This is not all on you. To develop an authentic identity, kids must decide what they like about themselves and who they want to be in the world. You can help by taking some time to sit with and discuss the skills, qualities and accomplishments they value most in themselves. If they are stuck, you can ask them what others have noticed and value as well. This not only helps your child take ownership of their identity, but it’s a self-esteem building exercise as well.

Once you’ve figured out what your child likes about themselves, be sure to comment when you notice something that highlights it. If they love their reading skills, talk about how they are reading a challenging book. And be sure to mention these strengths to and in front of others. Nothing makes a kid glow like “catching” their parent praising them in conversations with other adults!

Finally, while it’s important to emphasize the things that make them “normal”, you can also talk about how overcoming the challenges of their illness makes them strong. Point out the strengths you are seeing as they manage adversity, such as coping with the stress and discomfort that comes with treatment, or keeping a sense of humor despite everything going on. This will help build their confidence and develop resilience skills that will serve them throughout their life.

Encourage Hobbies and Interests

Despite the physical, mental and logistical challenges that come with cancer or another illness, it’s important for your child to continue to explore their interests and do things for fun. Hobbies naturally prompt conversations and learning new skills gives kids confidence – a critical ingredient in forming their identity.

Try to pack things so they can enjoy their hobbies at the hospital/clinic. And despite school pressure, be sure to make time for them to play at home. You should also be sure to talk about their interests with them and others in their life.

If your child can no longer do certain things due to limitations, find something similar they enjoy. For example, if they were an athlete, try sports games, fantasy leagues or competitive board games. There may also be adaptive sports they can participate in. For those who enjoy social activities, seek out opportunities online. They may even be able to video chat with friends while doing art, playing a game or doing something else they love.

Set Clear Expectations with Friends and Family

It’s natural for friends and family to ask how things are going and want to know more about your child’s health. However, before you know it, this is all anyone talks about. For the good of every member of your family, it’s important to set boundaries on what you will discuss and how much.

Feel free to interrupt if you feel the conversation has become inappropriate or gone on too long. It can be helpful to also suggest some alternative topics. Sharing regular updates on hobbies, interests and life outside your child’s illness and treatment can be helpful.

That said, people are curious because they care. So, it’s important to find a more appropriate way to keep them updated. Be clear on who will share updates on your child’s health and how. Social media, emails and websites like CaringBridge are all great options. Many websites also include areas to list how people can help.

Some parents choose to handle the updates, while others ask a trusted friend of family member to help. They can be the point person to send emails, answer questions and manage your family’s website. This way you only have to pass on information to one person, and they handle the rest. It can also be helpful to set expectations on how often information will be shared so others don’t feel they have to ask.

If all else fails and certain people repeatably have trouble following requests, it’s always okay to limit contact. Make clear you are managing a lot but will check in when you have the time. No one is owed information about your personal life or your child. You have enough to handle without added stressors.

Speak to Your Child’s Medical Team

Just like friends and family, you should speak to your child’s medical team about treating them as a whole person. Ask that they always use your child’s name, not “the patient”, even on rounds. And don’t be afraid to correct providers when they forget. You are in charge of your child, not the doctors.

It can also be helpful to share more about your child so the medical team can talk to them about other topics. Our All About Me Form (available in Spanish) can be a great tool. Share this form with doctors and nurses and/or post it on the door. This printable can also be useful with providers outside the hospital, neighbors, friends and extended family as well.

Finally, do what you can to set the stage and customize your hospital room. Bring photos of good memories and loved ones, or a digital frame to rotate through your family’s favorites. You can also decorate with art and objects from your child’s bedroom. And while hopefully you received one of Ryan’s Case for Smiles cheerful pillowcases from the hospital, you can make one yourself as well. Instructions for sewing a pillowcase can be found here. Make a bunch and rotate through them!

Make a Plan to Change the Subject

Inevitably, people will talk about your child’s illness and/or bring up undesirable topics. Together you can figure out a few phrases that are authentic for your child to change the subject. This is a great opportunity to bring up those interests they’ve been developing. They can also brainstorm things they share with other kids to show how despite it all, they’re just normal.

Next, practice a few times, so it feels natural. And let them observe you doing this yourself. The best way to teach kids is by modeling a behavior. And after seeing you do it, it will be less intimidating.

Finally, encourage your child to have a sense of humor. Even adults say things they shouldn’t. Sometimes the best way to end an awkward moment is by joking about it and having a few one liners may build up your kids’ confidence.

Model Having a Separate Identity Yourself

Just like your child, you may begin to identify with their illness. Many take on the role of “cancer mom” or “diabetes dad”. Be sure to develop your own hobbies, ones that energize and refresh you. This will help keep you going and show your child how to do it for themselves.

You should also be sure to make time for friends and do things outside the home. If it is hard to find childcare, try swapping turns with your partner, a friend, a family member or a neighbor so each of you can go out. You might also look to people you’re your child’s extracurricular activities, religious communities, your neighborhood or even past teachers and camp counselors for help.

Finally, be sure to talk about what you did, learned or saw with your family – and everybody else! This is a great way to model a healthy identity to your child and help you remember you are more than their caretaker or healthcare provider.

No one can deny it is hard to separate yourself from a child’s major illness or injury,  but try to focus on the big picture of life. You and your family are more than this medical journey, and your child’s illness is just one piece of a bigger puzzle. There was much that came before their diagnosis, and much more life to live after.