Popular media today confirms that the time has come to better address the emotional needs of kids struggling with physical illness: take the character Elsa in Disney’s ubiquitous animation, Frozen—if ever there was a poster child for letting go of your feelings when you have a condition which makes you different, it is Elsa! Once she expressed her feelings, stopped living in fear and hiding, and accepted herself for who she truly was (someone who froze everything she touched) she felt exhilarated, empowered, and sang “Let it Go!” at the top of her lungs. What a great role model for any child with a handicapping condition! Indeed, the creator and executive producer of Frozen, John Lassiter, said that for him, Elsa represented the very challenges his own son, Sam, faced when diagnosed with Type 1 Diabetes at age 10.
Feeling different is one of the most common concerns of a child or teen with a long-term illness or condition. Just because a young person is sick, doesn’t mean that the development stages are arrested or one’s social needs disappear. If anything, with the emotional ups and downs of grappling with health changes, these feelings and needs can be intensified. Normal teen angst, mixed with the heartbreaking fear of their diagnoses, as well as the struggles of their daily lives can seem devastating. So the importance of addressing social-emotional needs, such as needs for privacy and security, needs for fun and humor, needs for friendships, inclusion and acceptance, cannot be underestimated.
Think about how agonizing it must be to be in the hospital when friends are all at Homecoming, or worse yet, heading off to college. Sick kids can lose friends simply because they can’t participate in the same activities as before. Peers may abandon them because their sheer presence frightens them– it’s the first time they realize something like this could happen to them, too. Serious illness shatters the youthful feeling of invincibility. Teens may even isolate themselves because they look different or can’t relate to their friends the way they used to.
Many families try to keep things as ‘normal’ as possible for their sick child, and there are times that this method of coping is appropriate. But we also need to acknowledge that, to the child or teen himself or herself, nothing seems normal or familiar about their life, and pretending it is normal might not always be helpful. If we are too quick to try to make everything all right, we are not fulfilling the child’s emotional needs and are doing a disservice to that child. Instead, we should support young people by joining with them in their sadness, frustration, fear, or whatever they are feeling. We need to hear them out and give them voice. Acknowledging feelings, even if difficult, helps young people feel heard and understood, which makes them feel less alone on their journey to better health.
How do we get young people to open up about their feelings? A journal can be a safe place for kids and teens to pour out their feelings, a best friend when others don’t understand them. Journaling is a tool that teaches them to communicate, when verbalizing their fears is hardest. Young people with serious illness have very heavy matters to get off their chests, like whether they might ever walk again, ever fall in love or have a child of their own, or even live to celebrate the next holiday. I had brain cancer as a 24-year old and was given only six months to live. Luckily, I can tell you almost 30 years later that I’m cured physically, but I am still trying to get rid of the emotional baggage that came with my diagnosis. After I had healed physically from cancer, I only began to heal emotionally, and I am still healing. I honestly feel that if I had been better able to express my hopes and fears when I first had cancer, rather than holding in my feelings and trying to stay strong, I may have healed faster physically, and I’d have had the resilience to better deal with other health issues and emotional challenges as they came.
This is why I was so determined to volunteer and work with children with serious illness over the last thirty years, why I coauthored Digging Deep, and why I’m on a mission to get kids journaling.