My Normal

Kaila showing off her beautiful creation.

If you had asked me what I imagined high school to be like when I was a kid, my answer would not even come close to matching my reality. As high school began, I looked to fit in with my peers. Of course that’s the goal of every teen, to just be normal. Little did I know as I walked through the halls in 8th grade before the big transition, it would become one of the only normal things I did. Now that I’m officially a graduate, I can see just how different my high school experience was. Those differences are attributed to one thing and one thing only: chronic illness. 

Kaila and her mom at the Center!

Everything started for me with the hardest symptom for doctors to treat- pain. In middle school, my hands hurt all the time, my fingers contracted, and I was constantly exhausted. I confused every doctor I saw, so naturally as a pre-teen it was assumed that I was probably making everything up for attention. Little did I know, that would be the start of many frustrating doctors appointments and lots of medical uncertainty that I still face today. 

In 2018, my sophomore year of high school, after years of pain, I got a diagnosis of Juvenile Idiopathic Arthritis. Two years later my health has continued to decline. My hope of normal has dwindled down even further. Since my diagnosis 2 years ago I have burned through 6 traditional arthritis medications without any avail. Today my health is one big question mark, leaving doctors’ to speculate about a possible misdiagnosis. No matter what medical terminology my doctors’ come up with to describe my pain, there is no doctor who would disagree with the fact that I am immunocompromised and chronically ill. 

“The thing about chronic illness is that it makes you stand out.”

The thing about chronic illness is that it makes you stand out. From missing weeks of school at a time, to relying on crutches or a mobility aid to make it through the day; I’ve never blended in throughout high school. I became even more noticeably abnormal when a side effect of my arthritis medication made me lose my hair. Chronic illness made me different, I didn’t fit in. Worse than taking away my ability to be a teen, it makes me seem like I am exaggerating everything. Like it is impossible for me to be in pain 24/7. It is unfair that it takes me twice as much energy to accomplish half as much as my peers. 

Kayla and a teen group hanging out at the Center.

“I can’t say that I have overcome my illness, but I can say that I’ve found a place that makes life with a chronic illness more manageable: the Children’s Healing Center.”

Now, if my life was an inspirational movie, some dramatic music would play as I told you about how I overcame my illness, and the whole process made me live a more fulfilling life. But this is real life. I can’t say that I have overcome my illness, but I can say that I’ve found a place that makes life with a chronic illness more manageable. When I was first introduced to the Children’s Healing Center, I was wary of looking at it, but my mom set up a tour so I was going. I walked in and immediately felt comfortable. The Center quickly became a place where I was able to be myself in every way. It was the first place I couldn’t be singled out as different. The first place where it doesn’t matter what is wrong with me. It is just about having fun and doing teen things in a place where I don’t have to worry about getting sick. Most importantly at the Center I can feel like I am just myself, and I don’t feel guilty for not being able to do something. There is no judgement on anyone for what they are able, or not able to do. The amazing thing is that everyone there has a medical condition hiding behind their smile, but they are treated as any other person. My favorite place to spend time in the Center is the art room, by far. I’ve always enjoyed art, and at the Center there are endless options to be creative in the art zone. 

“Chronic illness took away my ability to live normally, but the Center gave it back.”

Kaila and another member in the Center’s art zone.

Chronic illness took away my ability to live normally, but the Center gave it back. Before COVID-19, I wore a mask to avoid getting sick. Even though they are normal now, they weren’t normal before March 2020. The Center provided a place to not need a mask and interact with other teens. Being a teenager is hard for anyone, but adding in a complex medical journey, and any sense of normalcy is taken away. When your whole life is going between the hospital and home for appointments, testing, and ER trips- you lose a piece of yourself. Before the Center I had lost myself and I was being defined by my diagnoses or symptoms. The Center is a shining reminder that I’m not just sick, I’m human too. I am beyond excited every time I see a Teen/Tween night, because I know it’s going to be filled with laughter, smiles, and friends. There’s never a shortage of smiling faces at the Center. It is truly just a break from the medical system, and a place to finally be normal and have some fun!

-Kaila DeVries, Center Member