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The Franklin Post

The Franklin Post

My Invisible Illness

I was diagnosed with a chronic illness when I was 15, a sophomore in high school, and still unsure how to pronounce “fibromyalgia.” I remember that day, how I woke up but didn’t feel awake, every sensation some unholy union of bleak and swollen. They call this fibro-fog, defined as a form of brain fatigue, an ordeal that had become routine.

Fibromyalgia—generally defined by widespread pain to your muscles, accompanied by chronic fatigue, and often forms of other pain—is just one of a myriad of diseases that fall under the umbrella of “chronic illness.” Diseases include juvenile arthritis, diabetes, epilepsy, and dozens of other disorders. Millions of teenagers within the US are diagnosed with some form of chronic illness, but exact statistics are difficult to quantify.

One of the first things the doctor tested for was cancer. That sticks with me the most vividly, the anxious look on my mom’s face, the way she moved to touch my arm; I knew that, despite it being my body, I couldn’t understand how she felt. I couldn’t understand, and in fact, some part of me hoped it was cancer. An expiration date before my 16th birthday was grim, but I found the concept of not having one more condemning. He told us there was no specific treatment, that I should try aromatherapy or maybe some yoga. He told us it was permanent. I figured the feeling of hopelessness was permanent too.

“Some days I can’t walk, so I have to stay in bed which prevents me from going to school,” explained an anonymous Franklin student with Ehlers-Danlos Syndromes (EDS). “P.E. freshman year was hell, because I could barely do the final without my hip falling out.” EDS refers to a group of connective tissue disorders. Symptoms include chronic joint pain, frequent dislocations, and muscle weakness. The student describes feeling like their bones are “grinding together,” which, they add, “really sucks.” They were diagnosed freshman year after first starting to show early signs of it—including standing up, only to collapse because their hip popped out. It’s often hereditary; the student’s sister and mother share the same diagnosis. People with EDS are sometimes referred to as ‘zebras,’ as in they appear to be one thing but are something completely different. “A lot of people with EDS aren’t yelling all the time in pain; they keep it to themselves because you can’t see it, so why bother someone?”

Unfortunately, this is often a central issue for chronically ill people. Discrimination against disabled people, known as ableism, is complex; for “invisible” disabilities, ableism shows up not as maliciousness, but more often as ignorance. It is an isolating experience to face chronic pain, only to be expected to continue living as though it is not there.

“An expiration date before my 16th birthday was grim, but I found the concept of not having one more condemning.”

Surviving high school is hard enough—sleeplessness might as well be on the syllabus for most AP classes; pulling an “all-nighter” isn’t just some quirky day-before-Finals habit, it’s a constant task. Insomnia, sleep-deprivation, pushing yourself too hard—high school instills a sense of “walk it off” attitude to physical health issues. So when health issues outweigh the ability to push through, there’s nowhere to turn.

Ultimately, for chronically ill students, high school can present impossible barriers. I was hospitalized about a year after being diagnosed. I skipped Pre-Calc to lie on the dry grass by the Marshall parking lot, my head throbbing at a quadratic rate. It was desperation—I couldn’t do it anymore. Teenagers with chronic physical illnesses are at a heightened risk of issues surrounding body-image, mental health, and drug addiction. As is true with all ‘hierarchies’ of privilege, disability and a dismissal of this experience cause a sense of hopelessness. On especially painful days, I would watch my friends walk down the hall, the comfortable stride of their legs, joints, muscles: luxuries they did not know to appreciate.
When given the opportunity to understand an issue, most people want to help, but often able-bodied peers aren’t aware of the existence, much less the adversities of having a chronic illness. After I shared a college essay on having fibromyalgia last year, my classmates immediately expressed compassion and solidarity. The following year, someone even asked how my pain was—the perfect question in that it leaves room for an honest answer. Whether it is checking in, offering to bring homework or food on particularly bad pain days, or just acknowledging the pain is there, empathy and support from able-bodied people means the world.

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    Joan SeebergerMay 30, 2018 at 5:13 am

    Well done article on Fibromyalgia and other so called invisible painful diseases not always recognized by people in and without the medical world. It is amazing young people are able to keep going graduating from high school and then college.

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My Invisible Illness