It’s not a realization that came to me easily or early on in my life as a chronic illness patient. It took me several years to finally recognize it and to see what had been in front of me all along.
Not until I marked my submission tracker with that most depressing word, “Declined,” did I make the connection. I realized that having a piece of writing declined and leaving a doctor’s appointment without any answers share many of the same emotions. (In case you wondered, my submission tracker is a simple form I made — a worksheet where I keep track of my submissions. I record the title of my submission, the publication I sent it to, the date I submitted, and there’s a space for follow-up information. This is where I often write “declined.” When I do happily write “accepted,” I also draw three stars in the margins.)
Let me explain my reasoning.
I am forty-five years old. When I was thirty-four, I became ill. It took a year and a half (which I now recognize as being somewhat on the “fast” side as diagnoses go) to receive a diagnosis — Undifferentiated Connective Tissue Disease. It’s an autoimmune disease my rheumatologist described as having overlapping symptoms of lupus, rheumatoid arthritis, and myositis. It means that on a daily basis I experience fatigue, weakness, and pain in my left leg.
But that’s just the beginning. Here’s what I’ve learned since — autoimmune diseases are complicated and confusing. Unpredictable and uncertain. Plus, they impact each person differently.
I see my rheumatologist on a regular basis, mainly for periodic check-ins, review of symptoms, and labs. Years ago, my doctor had told me that you don’t cure autoimmune diseases, you treat the symptoms. You learn to manage the disease and live with it the best you can.
Easier said than done. It’s been my experience that my autoimmune disease doesn’t follow any set rules or predictable patterns. I often have confusing symptoms. Inflammation markers are flagged on my labs, but nothing shows up on an MRI. Or, vice versa.
Doctors can’t give me any clear answers. They don’t have any makes-perfect-sense explanations. I leave my doctor’s office feeling dejected and disheartened. I wait for the elevator and wonder — if climbing stairs and emptying the dishwasher and sitting are difficult now in my 40s, what will these activities be like when I’m in my 60s.
Oftentimes, I believe doctors send me on my way because they assume I’m doing okay. In their eyes, I’m okay-enough. I’m not excessively calling or emailing the office. I am not abusing my pain medication. I remain active with my family and independent and self-sufficient. But is doing something with pain the same thing as doing something without pain? No. The bottom line is I push myself, continue to do as much as I do, because I still kind of can. Because the future progression of this autoimmune disease is uncertain. Because I hear a voice on loop in my head, “Move it or lose it.”
But when doctors dismiss me, tell me my labs are “normal-ish,” mention my latest MRI results are indeterminate, it feels like a rejection in a sense.
To make matters worse, many doctors and nurses use wording that suggests my physical health condition is somehow my fault. They don’t say my autoimmune condition is weird; they say, “You’re weird.” They don’t tell me it’s difficult; they say, “You’re a unicorn.” Which makes it really hard to distinguish between the patient (me) and the disease (UCTD).
So when I receive a form rejection, “We appreciate you giving us the chance to read your work, unfortunately…” it’s another dismissal. It’s a polite “thank you anyway,” without any explanation on why my creative nonfiction piece wasn’t a fit, or what I could have done better, or what I could do differently next time.
Ultimately, editors are telling me there is something wrong with my writing. And because I write personal essays, it’s so easy to make the leap to “there must be something wrong with me.”
But just as that train of self-thought starts to take off, that’s when I need to unleash my inner critic and banish those words.
A piece of writing was rejected by one potential publisher. That’s the fact. Everything else is unknown. So the hard-nosed self-critic tells myself to get to work, and find another literary journal or anthology or website to submit my writing.
As far as the doctors and nurses go, it’s not easy to speak up for myself, when I’m vulnerable on an exam table. It’s not easy to say, “I don’t like it when you call me weird” or “Autoimmune diseases are complicated; it’s not me.”
But I can write about it. I can write about the experience. I can get the words down so I get them out of my head and out of my heart and put them onto paper. After I write and re-write, and re-write some more, I will hopefully find my writing a publishing home. Then, my writing will hopefully connect with readers, others out there who “get it.”
It’s powerful reassurance that it’s not just me. That others living with chronic illness understand what I’m going through.
It’s a needed boost to my spirit, a boost to my writing, and the encouragement I need to continue writing another day.
Wendy Kennar is a mother, writer, and former teacher. Her writing has appeared in a number of publications and anthologies, both in print and online. You can read more from Wendy at her website, where she writes about books, boys, and bodies (living with an invisible disability). You can also find Wendy on Instagram.