It turns out July is Chronic Disease Awareness Month. Despite having a chronic health condition myself, I had no clue until a couple of weeks ago. I admit it’s not a very upbeat or celebratory thing to commemorate. Chronic illness is one big downer!
I can say as much because I’ve been coming to terms with a lupus diagnosis for a good while now, and it will never not feel like a downer. It feels unfair and, on some days, completely crippling. That said, if there’s anything I’ve learned about fighting through the doom and gloom of an unexpected life obstacle, it’s that bookish escapism is hands down a form of therapy.
I’ve always been a big reader. I vividly remember being ten years old, diligently toting around seven books to read simultaneously. (I’ve since come to my senses and only read one book at a time).
As a child, I read so incessantly and obsessively because, well, it was fun! That’s a perfect reason in and of itself. It was a joyous hobby but not an indispensable part of my identity then. I shelved it (pun intended) as a hobby many times growing up.
All of this changed circa 2020, when I found myself an unmotivated college freshman, mysteriously falling ill with an array of unpleasant symptoms. It would be a long, incredibly frustrating stretch of time until I received a diagnosis of lupus – with most of this waiting period overlapping with the onset of the pandemic. A double whammy, if you will. Frankly, I was in a mega-dark place, sliding dismally by in my spring courses and battling a perpetual existential crisis. Let’s just call it a self-discovery trip from hell.
I quickly learned that the mental component in a chronic health condition is the most vital to coping. Lupus changed my body, sure, but I felt the effects of it most severely in how it altered my mind. Everything had shifted – the way I thought about my life and future, my sense of self-perception. All of it got turned on its head, and I was, quite frankly, floundering.
According to the Lupus Foundation of America, “76%” of patients say that “fatigue caused by lupus has forced them to cut back on social activities.”
To say that I had “cut back” on socializing is an understatement. I’d cut it out entirely. My introverted tendencies grew exponentially as I learned how to recognize and cope with the span of symptoms associated with my autoimmune illness. Retreating from the world was quite easy because of the pandemic (I had a perpetual excuse).
However, that isolation came at a cost. I’m an overthinker by nature, and I spent each blurry to bleak week questioning who I was, what my life meant, and how I was going to live with this forever. The only bits of respite I found was through books.
In the hours I spent immersed in books, I found that sometimes I would, unwittingly, start reading out loud to myself. It was the strangest thing. It was as if I subconsciously needed to hear the sound of my own voice to remind myself I had one. Yes, I still had a voice. That was important.
This was where my bookish escapism started to pivot more towards writing ventures. I’d always fared well churning out essays systematically in school, but I never considered myself a writer. Principally, because I never felt I had a story to tell.
That said, I don’t want to proclaim that without lupus, I wouldn’t have been a writer. I don’t think that’s entirely true. Instead, I’d conclude that without the constraints of lupus, I would never have begun exploring my mind to the degree that made writing my sole and ultimate pursuit.
Inner World To The Rescue
So where were we? Oh yes, rock bottom (and all its successive installments). Despite some brief moments of respite, I would say I hung out around rock bottom with a pen in hand until around fall 2021. Retreating inward to the extreme left me with an incredibly busy, unruly mind and a very open schedule. So all there was left to do was write like mad.
In said writing, I got gritty. I got honest. I got vulnerable.
Above all, I changed my relationship with my diagnosis.
How? Well, I used my writing to take the horrendously difficult first step: acceptance. The pen played therapist, and I reconciled the reality of a chronic condition, focusing less on what it means for the future and more on what it means for the present. In other words, the pen was my tether to the now.
In doing this, I realized how rich my inner world was, so full of life and possibilities and freedom. Though the ultimate joy of reading is the magic of that escapism, I soon learned that writing serves an equally important function. Writing lets you shape your reality. Cheesy as it sounds, it can truly help you find your own voice.
Evidently, writing also opens real doors and opportunities! Little did I know at the height of my despair that the short story I wrote about my chronic illness – “Waiting Room” – would win me five grand and a publication. As I meandered into 2022, things finally seemed to be coming full circle, and I felt purposeful. Grounded. Dare I say, a little bit hopeful.
I draw upon this budding hope a lot when I peruse the scribbled entries of my Moleskine journal, which channel some of the most infinitesimal, intricate details of my day, the nuances of my memories. I’ve begun to view these meditations as the core of who I am.
By altering my mindset, writing has, in turn, altered my entire life (for the better). Best yet, writing is the one avenue where I don’t feel or see the limits of my illness reflected in it.
“A Reader Lives A Thousand Lives…”
The beauty of the reader’s life is the powerful cultivation of one’s inner world. To quote George R.R. Martin: “A reader lives a thousand lives before he dies. The man who never reads lives only once.”
This quote took on a much more profound application in my life as chronic illness shrunk my world. I frequently complained (and, admittedly, still do) about how “small” my life had become. There are certainly days when the limits of my body are all I can focus on.
However, my bookish endeavors have helped me tend to these disappointments and frustrations by providing my mind with infinite possibilities. I would fall in love with so many characters and so many fantastical worlds. I would live to the fullest in the literary sense, and eventually, I realized that that was more than enough.
If you read this far, thank you for hearing me out, and please click here for some book recommendations spotlighting chronic disease awareness this month.