Editorial - My Relationship With Chronic Illness


When I was a sophomore in high school, I suddenly found myself in so much pain that I virtually lost the ability to walk. I had spent the past couple of years in a constant state of deep exhaustion, but it was generally chalked up to depression or teenage angst, and it was not until I spent a family vacation riding around in a wheelchair and was discovered to be holding my breath and gasping for air in my sleep that I started to visit a myriad of specialists and search for answers.

Thus began my era of tests and doctors appointments and appointments with specialists in everything from neurology to sleep disorders to mental illnesses. I was incorrectly diagnosed with narcolepsy, RLS, sleep apnea, prescribed stimulants that I didn't need, told to change my diet, cut caffeine, try yoga, etc, etc. I had scans, sleep studies, missed classes, lost my friends, and still, no one could tell me what was wrong with me, why I went from being perfectly healthy to being unable to walk in the span of a few spare years.

I'm 22 now, and I've never gotten a proper diagnosis. I grew tired of spending money I didn't have on specialists who couldn't give me answers and didn't listen to me about my own body. I've learned to mitigate my symptoms on my own, and I'm certainly better off than I was in those first few years, but I've come to the understanding that I simply have disrupted sleep and chronic pain, and the existence of both of those is often difficult to contend with as someone who strives to achieve so much and pushes herself so far.

I'm often afraid of the future, as many people are. I'm often afraid that I won't be able to work, any longer, or that I will cease to be "useful". Though I would never hold anyone else to such a ridiculous standard, though I don't believe in defining a person's worth under the capitalistic consumer society we've created, I hold myself to this impossible standard and I fear what will happen when I falter. On the days when I am deeply in pain, these fears are worse.

The sleep study I took in high school found that my body is awake every 15 minutes, all night, every night. I fail to enter REM or attain proper, restful sleep, even though my mind isn't conscious, and I live in a state of chronic sleep deprivation. I inherited early-onset arthritis from my father, and the chronic sleep deprivation also causes general muscle aches and an inability to quickly heal from injuries, as well as the other sorts of problems you'd expect from years of a lack of restful sleep.

I'm writing this down partially because I've spent much of the time I've been in pain pretending not to be, and partially because I was recently asked to answer some questions about my short story, "after the flood", that reminded me just how pervasive a part of my life this is, even when I push through it and ignore it, against my better judgment. Though I am by no means old, I am realizing that I won't be able to push myself as far as I tend to do forever. In the past couple of months, I've injured myself a couple times and have been belligerent, angry, unwilling to let myself heal, and realizing all the while that it's the act of pushing myself so far for so long that keeps me from healing, which I already struggle to do.

It's freeing to put this all down, but it does not alleviate my fear. I have always been determined, an overachiever, unable to let myself relax, and it scares me to think that I will have no option but to slow down and that this might be coming sooner than I might think. In the meantime, I will continue writing about it as I process, as I have always done.

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