5 Ways Lupus Changed Me As a Reader and Writer

In honor of Lupus Awareness Month, here are five ways that chronic illness changed my reading and writing life for the better.

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As time passes and we move through different phases of our lives, our reading journey inevitably grows and evolves. Mindset, media, and day-to-day schedule all play a role in what we read and how often. Further, the books we read have the power to change how we view the world around us and fundamentally shape us as writers.

Given that reading and writing can be used in tandem to maneuver challenging emotions and experiences or to find a joyous escape from reality, it’s no surprise that the bookish world provides great refuge for people from all walks of life. I didn’t fully grasp this great power and comfort of the bookish community and lifestyle until I got inexplicably sick over three years ago and never recovered. It would take a year and a half until I got diagnosed with lupus, soon followed by POTS. Though I’d always been a book nerd, my obsessive reading and writing habits took root in full force during these difficult years. Here are five key takeaways I picked up along the way.

Counting Pages

Chronic illness is a reality-altering experience. After I was diagnosed with lupus, I began to view my life and identity in distinct segments. There was a pre and post-sick Erin and a pre and post-diagnosis Erin. In trying to reconcile past and present, I became overcome with grief over losing this pre-lupus version of myself. I started obsessing over the inexplicable passage of time—in which I always stayed sick yet became forever changed at every turn.

Eventually, I realized in order to get through each day (especially the hard ones), I had to let go of this fixation with sickness and the passage of time that always left me feeling panicked, stuck, and inadequate. In other words, I had to quickly learn to be able to exist purely in the moment. I used to think “live in the moment” was an insignificant cliche, but chronic illness forced me to reconsider. Part of letting go of that emotionally-devastating focus on the past came from redirecting my focus toward simply counting pages. Hour to hour. Day to day. Week to Week.


There was something uniquely cathartic about being able to take refuge in the constant, unhurried turn of book pages. It made the time I spent curled up in bed feel less defeating. It was my first step toward finding freedom in limiting circumstances that reminded me to stop preoccupying myself with who I was three years ago or who I may be tomorrow. Best to tackle my TBR and distance myself from all that inner self-sabotage!

Sense of Purpose

Though reading helped me pass the hours in a more sound mental state, it was writing that ultimately got me out of bed every day. A big part of my chronic illness journey involved having to find a new passion or goal that reestablished a strong sense of purpose. The phrase “one-track mind” really took on a new meaning in my life, as the way I maintained motivation every day was this desperate impulse to write.

Every time I found myself returning to that feeling of inadequacy and hopelessness, I reminded myself that honing my self-expression and telling stories was what I was here to do. It was a task I could do from my bed or the couch if my body wasn’t cooperating. That was okay. In general, it was okay to have to lay low in feelings of frustration or anger. However, even at my lowest moments (physically speaking), the writer in me was always strong. In this way, my writing practice not only gave me back my sense of purpose but it made me more resilient.

Book Hoarding Habits

Though I’ve always been predisposed to spending too much money at Barnes & Noble, my book-hoarding habits really took off after my diagnosis. When you spend a lot of your time dealing with symptoms that keep you homebound, you might as well focus your energy on making your room your personal sanctuary. And what’s more comforting to a book nerd than books?


Thus, the humble two wooden crates of books from my pre-lupus life exploded into three extra-tall bookshelves filled to the brim. I’m now tasked which paring down the collection (which seems like a personal betrayal) or fitting a fourth bookshelf into my crowded room. Clearly, my diagnosis reminded me that an ample home library was not a want but a need!

Reading as a Refuge

As all of us avid readers know, books make great company. Being able to immerse oneself in stories that resonate and challenge our outlook on life is an incredibly rewarding pastime that helps us feel less alone in our troubles. The heaviness and despair I experienced being locked into the world of chronic illness in my early twenties were significantly mitigated by this remarkable function of reading. That is, the way that storytelling reminds us of the universal struggle and frailty of the human condition.

You think your pain and heartbreak are unprecedented in the history of the world, but then you read. It was books that taught me that the things that tormented me most were the very things that connected me with all the people who were alive, who had ever been alive.

James Baldwin

Whereas I used to believe that lupus made my life “wrong” in some way, my reading and writing showed me that my diagnosis actually deepened my ability and awareness to live a life of learning and exploration. In order to better understand my own situation, I dove into philosophy and wrote constantly. I favored stories about identity and grief. I recommitted to learning a second language. Through all of these endeavors, I was reminded that the world was still in my grasp. I could still find joy and meaning in my life—even if it looked different than I expected.

Introversion Isn’t a Weakness But a Strength

Before I got sick, I very diligently masqueraded as an extrovert. I documented my outings and travels as if to prove to others I was living this adventurous, social lifestyle. In short, I made up a false identity. When lupus stopped me in my tracks, I finally allowed myself to stop pretending. I soared in solitude and didn’t feel sorry for it. I got rid of that inner critic of expectation. Hence, all the time I spent reading and writing really served as an exercise in authenticity. A way to truly honor my passions and my inner self. In this light, lupus both forced a reinvention of identity and brought me back to the introvert I had previously buried.

All of this is to say that there’s no shame in the bookish game! Read whatever brings you joy and fulfillment. Write what you want. Find your niche and own it! I think the bookish community is one of the best spaces for practicing being true to yourself. It quickly taught me that you can’t have full self-expression until you have self-acceptance. Though it’s still a day-to-day battle, I know now that my introversion is not akin to weakness, and I can always find the wisdom and reassurance I need between the pages of a book.

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