One of us is Dying

It's the permanent, gut-wrenching feeling of watching the spinning-top in Inception's ending sequence. Will it topple over? Are we still in a dream, can I wake up and it all be over?

It's not a dream. It's actually 4am in your hospital bed where you haven't slept because the woman opposite fluctuates between hysterics and vomiting. It sounds wrong. Like oil is forcing itself up her throat, gurgling. It reeks.

One metre away, the blue paper curtain surrounding your bed is thrown back. An outline of a woman - hopefully a nurse - is stood.

Outcome.

“Put this on,” she says, dropping what must be a hospital gown and underwear onto the bed. “You having a colonoscopy.”

I freeze. My white silk pajamas suddenly feel like armor. “What? A colonoscopy? I can’t—I’m not supposed to have one. I’ve been told I’m too sick.”

She doesn’t respond, already turning away. “I will go get your socks.”

My head shakes violently, my whole body trembling from the last twenty-four hours of hell. If I shake any harder, my head might spin clean off.

The woman is very confused by this. I can't tell if she just doesn't speak much english, hates me, or doesn't know what i'm on about. Everyone is still asleep, the lights in our ward off.

"Put it on. I come back with socks."

I most definitely do not put it on. I stay firmly in my hospital bed, sheet covering me as much as possible. She returns. She is not happy.

"Why have you not changed?"

She is a scary woman. She leaves the socks. I change.

It's hard to get the socks over my legs because they're those plane compression ones for long flights, and i've been growing my nails out for my graduation. I was going to paint them the night before. I had settled on red. My dress and gown are still hanging, waiting for me, in my flat. They are collecting dust.

I haven't slept because the cannula in my arm, fitted in a different hospital last night, is painful and I can't bend it at all. Throbbing. I'm boiling hot. The woman to my right has had her 'nurse. help' button on for ages, loudly complaining about how her bag has split again and soaked her bed. Bag as in stoma, and soaked as in, she's lying in her own shit and piss. The smell, again, is less than ideal, but the sympathy I feel for her overwhelms any self-pity. It's horrible to hear one person, let alone three, in various kinds of pain for hours on end. The guilt goes round and round - that i'm healthier than them, at the moment. That i'm complaining about having a colonoscopy, when they don't have colon's to check.

Fishing.

This moment, this day, frankly only gets worse. You are flocked with people who stare at you, not introducing themselves, and furiously writing in their notepads whenever you speak. It takes three nurses to take twelve tubes of blood out your arms. There are so many holes, so many bruises, if they let you out now you'd be confused for a heroin addict. This is because they were fishing in your veins. Fishing is when they put the needle in and wiggle it around—apparently, it’s malpractice. They tell me this as they’re doing it. The absurdity almost makes me laugh. Almost.

Breakfast, Lunch, Dinner - for the intolerant.

You're also caught eating a potato that they offered, ordered, cooked, and delivered to you. One of the many angry nurses flings back your blue curtain (which they adamently always try to leave wide open) and points an accusing finger. "You having a colonoscopy! Why you eating!" They all must hate you. You don't know what to say. "You gave this to me?" You ask, wide eyed. Scared. Honestly, so scared.

You don't eat for the rest of the day, nor do you have a colonoscopy. The waiting game is terrifying. A weird kind of russian roulette. When the curtain is flung back this time, will it reveal A) nurse who hates me, B) colonoscopy doctor, or C) my crying mother? We both cry a lot these days. Being a strong, independent woman is totally overrated.

Let's go back a bit earlier. How I got here.

It's 10am Sunday morning. Your phone is ringing for the third time.

"Hello?"

"Hello, it's Professor H-," she's quick with her words. Not sharp, just precise. "You need to get into hospital now."

"Oh. Like, today?"

She explains which hospital you need to get into 2 hours away, and how to get through the NHS triage quickly.

"You'll have to say you were driving past and suddenly had a flare up, which probably won't be untrue. Make sure you tell them everything you told me; the incontinence, the vomiting, the agony etcetera, ok?"

Everything is absolutely not ok.

"Today?" I look to my mum, sat on my right. My graduation is in two days.

"Pack a bag, cosy clothes. Maybe a book."

I'm confused, so I repeat her again, like I might be stupid. A parrot.

"A bag?"

Now the tears are coming. This is big. Bigger than I thought. Two days earlier, I had met with this consultant for the first time. She took some bloods and did an ultrasound on me. Whatever she had seen was bad enough that I was now being phoned on a Sunday morning to pack a bag and holiday with the NHS.

"You can't go to your graduation. No exceptions." She pauses. "We need to get you into hospital now, as soon as possible, and onto steroids."

Now dad is the parrot. "Steroids? What for?"

She explains briefly the inflammation in my gut is less than ideal. She will explain more once I get admitted by the NHS, then transferred to her specialist unit in another nearby hospital. Whats important is that I get onto a lot of drugs as soon as I can, before something worse happens.

What she insinuates here, unsaid but ominously looming, are big words like Cancer. Strictures. Surgery. Death.

I can't speak over my tears, which flow freely now.

How bad was it?

The devastations keep piling up. This morning, I didn't think I could handle doing a colonoscopy. An MTV, welcome to my crib, if you will. Now - now I was meant to stay in hospital? In the middle of no where? Alone? With my body acting like it is?

I do. I pack a bag, tears pouring down my face. My brother is gaunt - he thinks the worst immediately. He is relieved - actually glad - to hear I am only being hospitalised. Ultimately, it is better than death, but still not ideal.

---

And it's hard,

to be at a party

when I feel like an open wound.

Recently, I was handed a life sentence: Crohn’s Disease. A lifelong, incurable condition that had been eating away at me for years, unnoticed, unchecked. But before I tell you about the diagnosis, let me take you back—because diagnosing yourself isn’t a straight path. It’s a labyrinth of missteps, dismissals, and dead ends. Spoiler: it took five specialists, a homeopath, two dieticians, and a weeklong stint in a hospital two hours from home to finally get an answer.

A year ago, I wrote a similar essay to this one for my English degree at King's College London. I was told - by my consultant, one of the best if not the best IBD specialist professor in the country - that completing my degree in the state my body was in was a feat I should not have been able to achieve.

In that non-fiction piece, I blamed my severe anxiety for the extreme pain I was in. I would also like to reserve some blame for the university themselves, who as an institution gave me no support beyond "defer". Melanie (my mother) didn't raise no bitch - and this bitch wasn't giving up without a fight. Besides, what use did I have in delaying my finals till August, when I would still be in extreme pain from a chronic disease just now in the summertime?

Anxiety was the latest culprit in a long, long line of explanations for my symptoms; menstruation, hormones, dehydration, alcohol, hereditary issues, gluten intolerances, lactose intolerances, stress, enzyme resistance... the list goes on, but somehow - it always seemed to root back to me. I was doing it to myself, controlled or not.

This had, and had up until 8am this morning, always been a point of contention for me. There was an underlying level of guilt that my own indulgences, such as alcohol and gluten, were causing my pain. If I could just control myself - stop going out so much, stop consuming, I wouldn't have a problem. This was particuarly so with alcohol, and as a teenager I had certainly guzzled a bit too much. Yet, still, it felt unfair that I alone among my peers had to suffer for something so many do.

My personal essay on anxiety still stands strong. I do suffer. I can say so with particular emphasis on my life now, post-hospital-stint, because it's midnight and I'm suffering from insomnia due to the buffet of pills I am on. But, perhaps my anxiety has not caused this. That diagnosis is not the root of this problem.

Crohn's Disease - or colitis - is an inflammation of the large intestine (see also: bowel, colon). For me, it appears randomly across the organ as severe inflammation and can cause several other major symptoms: ulcers, diarrhoea, nausea, vomitting, weight-loss, pain, joint issues, incontinence, exhaustion, insomnia, etc. I have experienced all of these and then-some in the lead up to my hospitalisation. It was notoriously difficult to diagnose without being hospitalised - for testing, that is - and so like the very silly anxious little girl I am, I never got diagnosed. Eight years of suffering.

I can recall, vividly, waking up in the night with the usual fear of incontinence from the mounting pain in my gut.

I run to the bathroom of my two-bed flat.

The diarrhoea is sudden and the pain suffocating.

I dig out the insert of my small bathroom bin, one of the ones with a foot pedal, and start throwing up from the agony.

This doesn't take seconds to process, like how I imagine morning sickness to be, I am in there for an hour. I'm fully awake. I'm exhausted. The thought of food, of ever eating again, repulses me. In the mirror, I am gaunt. Now that I'm standing though, the process is kicked off again. An incomplete pass, that is what this is called. It can happen up to three, four, five times. Eventually, I crawl (occasionally literally) back into bed. I'm freezing cold and shaking despite the heating and layers of blankets. I pull them up to my chin and find the energy to text my mum, the blue light burning my eyes to the point of tears. I am so fully awake I know I will get no sleep. Despite this, I will wake up for my lectures. I attend my classes. Sometimes, I even drag myself to the gym.

Being diagnosed, hearing the words - Crohn's Disease - wasn't the relief many told me it would be. It was a nightmare I lived, live, with.

I see it behind my eyes with every blink.

The woman sobbing as they draw the markers on her to be fitted with a stoma bag in black ink.

Blink.

Forcing myself to an in-person examination, where I have to beg to be allowed to leave during the 3 hours in case I need the toilet. Initially, they say no, because I didn't request it at the start of the academic year. I wasn't this sick at the start of the academic year.

Blink.

Opposite me, another human screaming every hour of every day that they're trying to kill me!

Blink.

My friend telling me not to put this disability on job applications, because they won't hire you if they think you'll be too difficult.

Blink.

A man on a balcony telling me you look beautiful, you should try modelling, as I eat half the size of the meal he does because I'll be too sick otherwise. He knows I'm sick, have lost so much weight. He says it anyway.

Every time I go back for an infusion, the trauma hits me like a truck in a way I still don't know how to understand. I won't, not for a long time, because my hospital fired all the psychologists. When we get a new one, the backlog will be hellfire. I walk through those hospital doors, and my personality is wiped away entirely. I stare into oblivion. I cry uncontrollably as soon as I'm in the infusion chair, regardless of the fact I'm beyond used to the pain by now. For the entire day, I lose my voice. Can only sit and listen to music - the world beyond noise-cancelled out. I don't know who Sophie Slape is, because it isn't me.

My specialist tells me that, in the state my body was in, I wouldn't have even been able to think. My body was diverting all my energy, all my blood, to my gut in an effort to fight itself. I was literally tearing myself apart. I still am. I will for the rest of my life, if I don't have a bi-monthly injection of the god-send Infliximab. (In this household, we stan biologics).

This struck me, though, when she told me. The validation I felt hearing from a professional that I wasn't going mad -- because I felt that. Researching for my dissertation on the origins of female mistranslation and misrepresentation in ancient greek literature was simply one of Heracles modern impossible tasks. Reading hundreds of pages of criticism, research, translation, and theory to the tune of absolutely zero brain cells functioning made me feel like a mad woman. This is of course on top of all the other reading and writing I had to produce for my degree. Thanks, Kings.

I return to my earlier grievance with my university. There is no consideration for chronic illness, for serious bereavement, for any kind of severe physical suffering. When I asked about special consideration—pointing out that students with dyslexia, for example, receive accommodations—the response was, “How would we decide who is sick enough?”

The answer, I think, is clear. If you’ve had to literally kill yourself to graduate—missing your ceremony because you were hospitalized—perhaps a mark or two for spelling errors could be spared. The system is archaic, outdated, and frankly cruel. One week is not enough to grieve a family loss and write a four-thousand-word essay. Two weeks of mitigation won’t magically cure incontinence, pain, or nausea enough to sit a three-hour exam on Paradise Lost.

More must be done. The system needs to change. It’s not impossible to accommodate severe illness—if a student can provide evidence of repeated hospitalizations, blood tests showing severe inflammation, or a diagnosis like mine, that should be enough. But for now, I’m left with the scars of a battle fought alone, and the hope that one day, no one else will have to fight it the same way.