How This Chronically Ill Fashionista Found Her Spoonie Style

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by Claire Richmond |

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Outfit planning has always been an event for me. I think it started with wanting to be just like Melissa Joan Hart’s character in “Clarissa Explains It All.” When the show first aired on Nickelodeon, I was a timid and bookish 7-year-old. Clarissa Darling quickly became a role model. I coveted her style and maturity, but moreover, I longed for her strong sense of self.

Blind to fashion trends, or really anything the cool kids were doing, I embraced a quirky signature look: oversized T-shirts, mismatched earrings, and all colors of leggings. While I was still the quiet girl in class, my clothing conveyed the fun, playful side I had until that point only revealed to close friends.

Fashion became my superpower. I noticed how confident I felt in my favorite tee. I realized a jazzy print could lead to conversation with a stranger. In fact, one of my childhood best friends was drawn to my unique sense of style in fifth grade, and we remain friends to this day.

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I still love clothes. Only these days, my wardrobe consists of soft, stretchy knits, oversized cuts, and absolutely no underwire; I call it “spoonie style.” Spoonie is a term for people with chronic illness. It originated from the “spoon theory,” a concept that explains energy limitations using spoons.

My outfits complement my life, which is largely spent reclining indoors due to chronic fatigue and the daily challenges of acute hepatic porphyria (AHP). Even though I no longer dress to impress, I’ve found a style that is true to me.

Before AHP turned my life upside down, I was career-driven. Like many professionals in my generation, I derived personal value from my work. As long as I held on to my tailored dresses and boots, I could live in blissful denial of my situation and its long-term implications on my professional life.

My body knew 40 hours a week wasn’t feasible long before my brain caught on. When I began transitioning out of a full-time office schedule, I spent weeks’ worth of mornings awkwardly staring into the open closet. Leaning against the door frame in a daze, I took inventory of all the outfits I loved, but that no longer made sense. I couldn’t fathom a life where I wasn’t working full time. It wasn’t part of my plan, and certainly I didn’t have outfits reflecting this transition.

Sometimes I spend days of my week hooked up at the infusion center; where were my outfits for that? Where were my comfortable waiting room clothes? What would I spend a sick day wearing?

At that point, the loungewear I owned consisted of holey yoga pants and old concert shirts — talk about depressing. As if I wasn’t having a hard enough time grieving! In “The Life-Changing Magic of Tidying Up,” Marie Kondo identified this common trap so many of us fall into when it comes to loungewear. Often, we focus our resources elsewhere and what we wear around the house is sloppy, stretched out, stained, and ill-fitting.

The ritual of outfit planning and getting dressed has always been an important part of my day, so I wanted to be purposeful about building a wardrobe of cozy loungewear I felt good wearing. The last thing I was going to do was wear the same pair of sweatpants to bed that I’d had on all day.

It took some time, but I’m proud to say I’ve embraced the loungewear trend. My acceptance was likely helped along by the COVID-19 pandemic, when office workers everywhere traded their pencil skirts for leggings.

It doesn’t hurt that increased market demand led to an endless variety of athleisure options. All of a sudden I have not one, not two, but seven pairs of sweatpants. I own sweats for every occasion, in a variety of weights, lengths, and colors. I have sweatpants for indoor chores, pajamas, and exercise. I even have a pair of joggers I can dress up.

Following is a list of five recently purchased loungewear pieces I am living in this summer.

Nothing compares to the thrill of finding a style that speaks to your soul or glancing at your reflection and looking like a million bucks. Yes, it is still possible to get this feeling in loungewear! Tinted moisturizer helps, too.

If you’re reading this wearing your faded Belle and Sebastian tee from 2003, it’s OK. (It really is, I’m a little bit jealous!) Just know that when you’re ready for a spoonie style update, you have options.

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Note: Porphyria News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Porphyria News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to porphyria.

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