Sick people don’t always start out sick. Some live the majority of their lives perfectly healthy, doing everything they can to stay that way. That is, until that exam room, that one doctor, and a diagnosis that brings their previous life to a halt. At 16, I was diagnosed after setting foot in a new school full of wonder. I searched for any guidance, any teen in my situation, but there are few. There is hope beyond that exam room, and a life awaiting you outside of your diagnosis. You have to lose your old life to gain a new one.
My old life was a childhood filled with school, reading, writing, and horseback riding. I was referred to as a gifted kid and presented to teachers as a new challenge. These situations caused me to fall into a rut of never allowing myself to take a break; I’d be great or nothing.
This was until the summer before my freshman year in high school. I had just tied a neat bow onto my last year of middle school, winning two awards for my academic excellence, grit, and kindness towards others. Did this satisfy my need for greatness? Not even close. My afternoons were spent grinding on any assignments, working until 10 pm for free at my local barn, and staying after school for mentorship by my English teacher.
July 17th, my excellency collided with fault, my back cracking from a horse fall. My new horse and I had our first ride together at my barn, flaunting my progression and how hard I’d worked to find him. After a few partnerships, he felt like the one. The accident was stupid, to be blunt. A sprinkler mistakenly went off while we were riding outside, spooking him and throwing me to the floor. At that moment, I knew it. The first thing I said was, “I think I broke my back,” simultaneously with hoarse gasps and cries escaping my mouth. After a misdiagnosed ER trip, we discovered I was right. Following this, I endured countless doctor appointments from complications and anxiety that riddled my body. What if I’d never be great again? I fell into a deep depression, forced to succumb to the overbearing weight of my medical issues and bullying. That year, I disappeared.
The following school year, I found where I belonged in a new school. Considering my previous injury, my pain every day seemed normal. Many teens with chronic illnesses are overlooked by their doctors—and sometimes, themselves—as it is labeled as anxiety or faking. I was a glass child until I broke the glass.
My new life consisted of physical therapy twice a week and double the doctor’s appointments, to treat the untreatable Amplified Musculoskeletal Pain Syndrome. The view on sick people is that being sick is all they are, not just a teenage girl, a sick girl. The distinction is not just a diagnosis; it is a label. This label is gifted to anyone, but it erases your previous embodiment in the eyes of the majority. You are chronically ill. What nobody realizes is that you are still the person you were before, and you grieve your past self constantly. Your life may not change completely or drastically, but it is a painful, unwilling adaptation to unwarranted circumstances. After diagnosis, a previously healthy teenager conforms to an abstract life without processing. They don’t choose the new life, but conform out of necessity for survival and comfort. Maybe seeming normal, but the hidden grieving, despite living through illness, is a swept-away curse. Diagnosis brings the physicality of a chronic illness, what everybody sees. You are hurting, sick, and tired, but you are also sad. Nobody chooses sickness; the grasp is fought with and eventually accepted from exhaustion. The grieving is not just for your body, but for your family, your future, and your life. Often, teens like me grieve through the five stages of grief.
- Denial – Refusing to accept the circumstances and pushing yourself beyond belief to hopefully become “normal”.
- Anger – Why me?
- Bargaining – If only I had done this, pleaded with the doctors more, or ignored it.
- Depression – Who am I now? Will I ever feel like myself again?
- Acceptance – Slowly moving forward into the new life, but never fully letting go of the grievance and memories.
Being a teen makes chronic illness inherently difficult. Your teen years are when someone discovers, pushes, and enjoys themselves. These ideas are carved into a teen’s heart, their bloody dreams forever scarring the once hopeful child within them. In the life of a teen with chronic illness, advocacy is necessary. My biggest struggle, along with many others, is feeling utterly alone in my illness. Every adolescent must learn skills of self-advocacy and adapt to a completely unwarranted life change. In summary, it’s seemingly impossible.
The question is, how do you navigate this? How can I help a teen with a chronic illness? Adaptation is a struggle, but doing it with support refocuses the pain and lessens the load. Advocate, familiarize, and flourish. Chronic illness is a descriptor of someone, but when it becomes a definition, the grievance cycle repeats. In my case, I had to advocate for myself to my doctors. This resulted in diagnosis and necessary treatment that otherwise would have been left. Being someone’s support person and advocate to a doctor or someone being critical leaves your loved one with the comfort of safety. In the face of uncertainty and whiplash from healthy to sick, they need someone to count on. Familiarize yourself with the chronic illness— what it requires of you, or how you can help the person. You can’t know how to be sick; the only way to know is to learn by experience. But, to aid in recovery, treatment, or mental health, being informed can do wonders. With your peers, familiarize them, help them understand, and lift a weight from your person’s shoulders. This leaves out the painful repetitive explanation to friends and family, as if your person is not enduring this themselves every day. Sometimes, they just want to be themselves, without the story or label.
Being sick, you must find ways to flourish. The majority of chronic illnesses take a drastic toll on a teen’s life. The most beneficial thing you can do is live in ways you can. When I had to leave my dream school, I applied to online advocacy groups, found my love for media and music, and enjoyed my life outside of my illness.
Having a chronic illness can describe me, but it does not define me. When I was alone, I wished for one case study, one person to tell me that there is life beyond this. I’m writing this so one teen out there knows they are seen, despite how isolated they may feel. My diagnosis left me melting into the bathroom floor most hours of the night, with little support. Symptoms of chronic illness aren’t just pain, nausea, or fatigue; they pump our veins with feelings of bewilderment, depression, and solitude. We are incredibly transparent, only reading “sick”. Choose to shine a light onto the glass and cause a reflection.
Author’s Note:
A basic yet deeply personal story to me of my battle with chronic illness as a teenager. This piece reflects on my journey in hopes to connect with an audience. My goal was to make one person struggling feel less alone, whether it is the patient or a loved one.
Danielle Fisher | 17 | Simsbury, CT
