I'm Finally Accepting My Life Will Be Different With Illness


I knew something was terribly wrong when I was in the emergency room twice this past summer for excruciating musculoskeletal and joint pain. Since August of this year, I have been diagnosed with a multitude of chronic illnesses, including fibromyalgia, Ehlers-Danlos syndrome, and postural orthostatic tachycardia syndrome, to name a few. At first, I knew they would affect my life in some way, but I didn’t think I would have to make any sacrifices to take care of myself. I guess I thought my body would adapt or evolve somehow to fit into my life. Oh, how very wrong I was.

During the late summer and into early fall, I thought I had seen the worst of my chronic illnesses. With the humidity and heat disappearing, I thought winter would be better for my body. I thought I would be more focused on my seasonal affective disorder instead of pain, subluxations and syncope. I thought I could keep my job in fast food and continue attending college full-time. I thought it was simply impossible to be sick for so long and it would let up, that there was no way my symptoms could last a lifetime. I thought I would be OK and succeed in my current endeavors.

I thought.

I thought.

I thought.

Winter did not bring improvement. Winter brought stiff joints and ribs that had taken a new liking to wiggling their way out of line. Winter brought fibromyalgia flares that were just as bad as its initial onset. Winter brought brain fog that made me feel like I had wool stuffed in my brain. I didn’t feel like me anymore. I felt like someone had replaced my body with a broken doll. And, of course, winter brought seasonal depression, which despite hours in front of a sun lamp and an increase in my antidepressants would not cease to shadow my former optimism.

I tried. I tried to keep my job, but when pre-syncope scared me so much I thought I would faint into a deep fat fryer or grill, I put in my resignation. I tried to stay in college and even dropped a class to lighten my load, but my school is a 45-minute drive away which proved too much for my body to handle. I began to spiral into denial, hopelessness and depression. There had to be a way to make things work. There just had to!

But there wasn’t.

I am currently in the process of accepting my new way of life. I spend much of my time in bed. I still go out, but by “go out,” I mean grocery shopping with my mom as my guardian, returning library books I’ve read several times over, going to doctor appointments and picking up prescription refills. I have found some joy in writing, drawing, coloring, reading, playing video games, painting and social media. On rare occasions, I use a cane to get around. I am never bored, though, because handling my illnesses is a job in and of itself.

I still have plans for my future. It’s just a matter of accommodating my body, not forcing it to adapt to a life that is no longer mine. I have been born again into a new world, and I will survive.

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