When the Facade of Strength Is Torn Down as a Chronically Ill Teenager

I am only 17 years old, and already I have been diagnosed with a number of conditions, including a rare skeletal condition called Klippel Feil syndrome (KFS). KFS is a degenerative bone disorder characterized by the fusion of the vertebrae in the neck, and since it’s a syndrome, it has also brought along friends such as Duane syndrome, juvenile onset arthritis, and Hashimoto’s thyroiditis. These conditions heavily affect my everyday life. I experience intense pain. I adhere to a strict medication regimen multiple times a day. And some days, it takes blows to my self-esteem.

Most days I thrive, as I have been dealing with my illnesses since I was 11 years old and know that I will not let it hold me back. I view it as another a way to help others and continuing to advocate for those who can’t.

However, there are days that are harder than others. These days, the facade I try so hard to hold up falls. I worry that one day I may lose the ability to walk, and I worry about not being able to have a “normal” job. I worry how I’ll pay for my medications. I worry about my pain becoming stronger than my medicines and having to cancel my whole day. I worry about how my disability affects my loved ones.

It’s on these days I find it hard to understand the problems my peers are facing. They worry about boyfriend problems and that their hair is a mess. They worry about not being invited to the latest parties, and who is mad at who this week. Their problems seem so simple to me, but so intense to them.

It hurts me, because as strong as I am, there is still a small part of me that wants to be “normal,” and only have to experience these teenage problems.

It was on one of these days that my mother worded it best.

“You are not ‘normal.’ You are mighty,” she said.