By 2015, I could no longer get out of bed. What had begun two years earlier as severe migraines had morphed into a relentless, unending dizziness. I made my way from doctor to doctor, but with no concrete diagnosis in sight, I grudgingly took up residence in the land of the chronically ill. I put away my sparkly dresses, let my collection of high-top trainers gather dust, and sunk deep into my blankets, swaddled in self-pity and old, shapeless T-shirts.
During this time, my only window to the outside world was the internet. I’d gotten into the habit of desperately Googling my symptoms (and the names of all the diagnoses that sounded right), but that only led me to online forums filled with frustration and anger, test results and despair. Eventually, I started to search for chronic illness tags on social media — and it was here I first realized that I wasn’t alone.
I found Katie, who runs the blog Conquering Fear Spiritually: a documentation of her complete recovery from chronic fatigue syndrome and mentorship for others struggling, too. I discovered The Pillow Fort, run by Lizzy, a website and community with the tagline “making chronic illness suck less.” I found the writer Esmé Wang, who lives with late-stage Lyme disease and who created The Unexpected Shape, a collection of beautiful resources for “ambitious people living with limitations.” And I found others without illness-related projects, but who, too, spoke about their health and lives openly and sincerely. They were mostly women. Some had diagnoses, some didn’t. Some could leave their beds, others couldn’t. Like me, they were writing and tweeting and trying to live their best possible lives. But unlike me, they looked good while they were doing it.
These impossibly lovely sick women wore caftans made from printed silk. They donned pastel headscarves to cover clumpy hair fall and soft wool slippers to house their swollen feet. They lay on couches in floor-length dresses and went to see their doctors in linen trousers that often matched the colors of their walking canes. Wang started the hashtag #sickgirlglam — photos of women wearing bright lipsticks in hospital beds, floral dresses at home, gowns to the dinners they wheeled themselves into.
In a medical context, the word “chronic” is defined as a symptom or set of symptoms lasting more than three months. But if you live with chronic illness, chances are you’ve met enough doctors and disappointments to know that what most people experience as chronic is a mental or physical symptom that will likely never fully go away. Ever. The terrifying magnitude of this unspoken prognosis is what led me online, past countless forums of digital despair, to these resilient sick girls.
And because the first — and sometimes only — facet of someone you experience online is their aesthetic, it was the elegance and grace of these women that drew me in. It wasn’t just because they had beautiful clothes and bedrooms, but because their robes, their hair, their sofas came together and spun soft threads of hope in the face of everything the word “chronic” symbolizes: hopelessness.
I wanted in. So I bought two expensive, patterned, pure cotton caftans.
For generations of South Asian women, caftans have been go-to loungewear. Loose and airy yet appropriately modest, caftans are worn to sleep, to answer doorbells, for quick early morning trips to vegetable vendors. The caftans I bought were more fashionable versions of their predecessors, but I couldn’t help recall my grandmother when I put them on.
Floor-length, deep v-necked gowns, these upgraded caftans were made from pure cotton and block-printed with intricate patterns. One was pink with a gold and white pattern, and the other yellow with sky blue floral prints. They had a cord stitched into their free-size waistlines, which, when tightened, left me with swallow’s wings for arms and a softly cascading skirt below.
As I swished around my house with fabric trailing the floor, my delighted cats in tow, I felt a glimmer of hope. I could no longer dance in tiny shorts or catch the bus in my multi-colored Adidas high tops, but this –— this life of pure cotton and floor-length comfort — this I could do. And if I could own it, then maybe, just maybe, I could own my illness, too.
How do you own an illness that refuses to go away? How do you prevent it from owning you? As I discarded my clothes to emulate the illness aesthetic I was so drawn to online, I began to realize that the hope these women represented for me wasn’t always about recovery or success. Instead, it was embedded in the aesthetic itself: It was grace.
The word grace is commonly used to talk about smoothness in movement or dignity in conduct, and the illness aesthetic I found online often fit the bill for both these definitions. But there’s also grace in the biblical sense of the word. Here, Grace with a capital G means “unmerited mercy” — forgiveness that you do not deserve, but that you receive anyway.
Most people living with chronic illness — many of whom are women — have at various junctures been blamed for their health. Are you too stressed? Too sad? Too much? We hear this from the medical establishment, from “well-meaning” friends and family, from strangers who see us in wheelchairs when we don’t “look” sick. And after hearing these accusations leveled at me time and time again, I found myself privately echoing their words.
If only I hadn’t gone there or done that, if only I had handled trauma better. If only I was different in a multitude of ways, then everything would be different; then I would never have fallen sick. This vicious cycle of blame is a very heavy burden to carry, and over time, it completely paralyzed me.
I bought the caftans seeking an aesthetic of grace — soft, flowing, dignified — but what I was actually after was Grace itself. I wanted a way to grant my body and mind what I no longer believed they deserved: a pardon.
The only problem was, I’d started to secretly hate the caftans. Come Indian summer or British rain, I have always been a shorts kind of girl, and the further I moved away from my denim hot pants, the more disoriented my illness made me. Instead of escaping into the deceptively comfortable world in which the internet’s sick girls lived, I was sinking deeper into my illness, drowning under patterned, pure cotton layers.
The turning point came when I used a doctor’s appointment as an excuse to visit some relatives in a neighboring city. After finishing up at the doctor’s, I returned home, showered, and put on my pink and gold-flecked caftan. The next the morning, my younger cousin came into my bedroom, looked me up and down, and asked, “What the fuck are you wearing?”
And honestly, I no longer fucking knew.
There are many women for whom caftans are second skin; several of these women are a part of my family. However, none of those women are me. At first, the fact that the caftans had never really felt like me had been very much part of the point. My illness never felt like me, either, and if I couldn’t alter my symptoms, then I would try and alter myself. But as I stared at my cousin staring in horror at me, I began to suspect that I’d made some major miscalculations along the way.
I went back and started trawling through the internet archives of the sick girls I so badly wanted to become. I discovered that before they fell ill, many of these women still wore vintage dresses and silk scarves. They went to flea markets and found the best skirts, they stood in overnight lines coveting Black Friday deals on camel-colored boots. They may have updated their sleepwear and swapped heels for sturdier shoes, but it turns out the headscarves, the pastels, the beautifully soft couches were always part of their lives. Here’s what I had crucially misunderstood about the illness aesthetic I coveted so much: it was never about looking a certain way for your illness, it was about looking like yourself despite it.
Which was, ultimately, the reason I loved these women: their ability to stay themselves despite an illness that had already stripped so much away. One of them, a successful writer, composed an entire book on the Notes app of her iPhone because she can’t sit up at her laptop. Another has found the ability to ask for significant help while cooking, even though she used to be able to make a four-course dinner single-handedly. One woman goes salsa dancing when she can, and then sleeps it off for a week.
And when it comes to their clothes, these women may have softened and lengthened here and there, but when someone tags a selfie #sickgirlglam, they’re not saying “look at my illness,” they’re saying “look at me.”
So look, then. Look at me. I still get headaches, and my neck always hurts. My dizziness is better, but I have no idea when it will strike or how long it will last for. I’ve long since abandoned my caftans — they’re now at the bottom of my cupboard, buried under piles of clothes that I believed I was too sick to wear. Shorts and sparkly tops and jumpsuits. Dresses and jackets and skirts.
The truth is, I never looked graceful to begin with, and I don’t particularly want to look graceful now. Because I was right about one thing: Grace, for me, was always about forgiveness.
So today, when I’m the girl in gold shorts too dizzy to walk, that’s okay. In fact, it’s more than okay. Because it means that despite all my illness has taken away, I’m refusing to let it take me.
This piece originally appeared in Racked on 26 October 2017