Gentle, pale, shivering and faint. She usually lies in bed or makes quiet and rare appearances to play the piano – think Beth from Little Women.
Opinionated, thoughtful, intelligent and resigned to her fate. She drags an oxygen cylinder around and sports cannulas on her face like it’s no big deal – Hazel Grace from John Green’s The Fault in Our Stars is an icon now.
We all know her. We’ve all seen her on our screens and read about her in novels. ‘The Sick Girl’ is an omnipresent part of our literature, cinema and culture. The trope has evolved a fair bit since the fragile Victorian damsels that were usually blonde, blue-eyed, and indubitably pure. These delicate women almost always had vague diseases – “the consumption” or “a fever” were euphemisms used for diseases that were unmentionable at the time – things like cancer, AIDS, syphilis or even diarrhoea.
The Sick Girl of yore was never dirty or messy. Her disease made her pale, delicate, and perhaps a little sweaty, but always in an attractive way.
However, over the centuries, the appearance, demeanour and importance of The Sick Girl has changed. While she mostly took on the role of a side character whose death served as a plot point, she has now become the protagonist of many modern movies. Stella from Five Feet Apart battles cystic fibrosis, which endangers her life everyday. Fearless. There’s no hiding the disease – in fact, these movies zoom straight into the nitty-gritty of it all.
The character of Stella Grant, played by Haley Lu Richardson, in ‘Five Feet Apart’.
These tropes will always have a permanent home in our stories, but what happens when you actually become The Sick Girl?
Everyone reads her stories and cries with her when her boyfriend dies, but nobody ever wants to be her. No one expects to be her at any point in their lives. Sometimes you even thank your stars that you’re healthy after watching such movies.
Then one day, things start going a little downhill but it’s nothing that serious. There are aches that don’t go away, and strange things that never happened before start happening. You ignore it, and then address it.
Before you know it, it’s been a year of worsening cramps and other symptoms and you’ve now been diagnosed with a chronic disease.
A chronic disease is not always a death sentence. Nor is every chronic disease cancer. There are thousands of diseases out there with no cures which can affect a person’s quality of life forever, in invisible but tangible ways.
My story as The Sick Girl began at the start of 2019. My digestion, which was what they call steely strong, was ever so slowly failing me. I paid no heed. It was a phase and it would pass. Over the next few months, the food that I had eaten all my life made me double over in pain, experience awful indigestion, forcing me to run to a bathroom as soon as I ate.
I lost weight, and enjoyed it in a perverse way. I had the body I wanted, but something was going wrong, and the stream of doctors we visited either dismissed it, or couldn’t their finger on it – it was just an upset stomach that never got okay.
We only got closer to a diagnosis when the bleeding started. In the thick of the lockdown, we initially depended on online consultations. When none of those worked, we worked up our nerve and stepped out of the house for the first time in months to visit a gastroenterologist. After prescribing a diet of boiled food and a string of tests, the last thing the doctor said to me was, “Let’s hope it’s not colitis.”
I frowned, “What is colitis?”
He refused to tell me. After several tests (including one for coronavirus), procedures and biopsies, I was diagnosed. It was ulcerative colitis. It was incurable, but manageable with large doses of medicine.
I was The Sick Girl now. And I had never even heard of the damn disease till the month before.
Colitis is an auto-immune disease where the body’s immune system attacks the inner lining of its own colon mistakenly, causing severe inflammation and ulcers. The disease flares up from time to time (a relapse), and large doses of medication and diet changes can make it go into remission, but the risk of a flare-up is permanent and lifelong.
There are various types of the disease, and mine was a mild case – which meant I dealt with constant bleeding, cramps, fewer nutrients in my body, and discomfort daily, despite swallowing giant pills every few hours. A worst-case scenario was getting colon cancer, surgically removing the colon and wearing a colostomy bag. But my doctors told me I was far from it, and after months of trial and error with medication, we managed to stop the bleeding and a host of other symptoms. My diet changed overnight to a vegan, no-spice, no-oil diet. My three favourite food groups – dairy, meat and alcohol – were done away with.
My first reaction to these restrictions was acceptance – I had to make the changes to save my life. If I didn’t control my condition now, it would worsen. But the resentment grew in just a month when I saw my peers whipping up quarantine treats on Instagram while I ate overcooked lauki. I craved a glass of wine; I definitely couldn’t have one. If I walked more than 15 minutes, pain and fatigue would set in. If I lifted something even a bit heavy, I had to set it down fairly quickly (I’m happy to report this has gotten better).
The disease was directly related to stress, which meant I had to quit my job which stressed me out greatly. Coincidentally, the day I sent out that email was the day Japanese prime minister Shinzo Abe resigned from his position because of ulcerative colitis.
On the outside, I was the picture of health. On the inside, I was The Sick Girl, but in the real, modern world. No porcelain Victorian doll, no ballsy Hazel Grace with any outward marker of sickness, but a different type. The constant fatigue and the extended sleeping times have to be fit into a schedule which nobody sees. Nobody really ever knows that you count your days by how many new medicine boxes you open.
At first, only my closest friends were told about the diagnosis because I didn’t want to be The Sick Girl. Since then, I’ve become more open about sharing my story because it may end up educating people about a disease they didn’t know about, or may be unknowingly going through. It may encourage someone to speak about their own struggles.
The fact that I’m in my home because of the pandemic makes it easier for me to take medication eight times a day, have access to the right food at all times, and have a clean bathroom to use ten steps from me. The few times I have stepped out, these basic things have been a struggle.
I’m trying to focus on the positives of a situation I’ve mostly made my peace with. At the moment, that’s the end of the next six months when my medicine will be reduced, and that we live in a time where I don’t have to disguise my disease with vague names. That’s progress.
Today’s Sick Girl can’t be laid up in bed all day with ‘consumption’ – she has a career to build, photos to shoot, stories to write, and a living to earn. She carries on (to the best of her physical abilities).
Fawzia Khan is a photographer and creative director, whose first love has been, and will always be writing.
Featured image credit: Pariplab Chakraborty