A chronic illness reveals, for a 20-something, secrets about life, body and mind

"Your body is stupid."

In a small room of a large hospital, I sit across a man I barely know and struggle to come to terms with my sickness in particular, and all that has come with it in general. I had met my therapist only a handful of times before. For every answer, I have a counter question. For every piece of advice, I have a retort. But on the day he tells me my body is stupid, repartee fails me.

You see, my body and I share an intense, one-sided relationship. My body was the boy whose texts I’d always reply to, the one I’d flake out on my friends for, the cause of and solution to my bad mood. If we were classic literary romances, my body would be the Ashley Wilkes to my Scarlett O’Hara, the Estella to my Pip, the Daisy to my Gatsby.

Being ill, when I last checked, was a little like the weather. A bout of acne, maybe?

My point being that sickness could be uncomfortable, sickness could be annoying, but at best, sickness was a phase. "It might be dark and rainy for two weeks in a row but it will be sunny one day," British author Stephen Fry reassured a depressed fan in a letter a few years ago.

I started looking for answers the day I got ill.

On a Delhi summer night, I sat on the floor of my bathroom, as feverish as the weather, throwing up. Pork ribs were poison, they had to be. I recovered in a few days and forgave pork (and the ribs) soon after. But it was the summer of doom, and I found myself on the cool, orange tiles, riddled with pain, too many times for it to make sense that June.

Or lying on my bed early one morning, unable to get up, despite a full night of sleep. Symptoms varied, weeks passed by. Week one, throwing up. Week two, nausea. Week three, debilitating fatigue. And on week four, I was certain someone had set fire to my insides while I slept. But the pain needled on. That summer, I went from clinics to hospitals to laboratories, from ultrasounds to CT Scans to MRIs, from a (very short) gym stint to a (very hipster) long-haired faith healer in Maharani Bagh.

"You’re okay."

Of the seven doctors I met in two months, none were able to diagnose me but all revelled in advising me. "Stop worrying, you’re doing just fine." Or, "It’s in your head!" But was it, really? One morning, a sore developed on the inside of my lower lip. It didn’t hurt, but it didn’t do anything else either. It just stayed there — bulbous and pestilential — for months.

Over the next few weeks, I began losing incredible amounts of weight: at 23, I could now effortlessly fit into a T-shirt I got on my tenth birthday (why I still had it is a topic for another ramble). My eyesight deteriorated, my hair thinned, my blood pressure dipped to a startling figure of 90 by 60.

Often, in the wee hours of the morning, I’d wake up with a pain so oppressive, I’d will myself to go back to sleep seeing no way out. If I was "just fine" to doctors, I was exactly the opposite to my family, friends and funnily enough, the public at large. While waiting at the chemist one day, a man did a double take to give me some unsolicited life advice. "Just.eat.well," he stated before getting on his way again.

Being the "sick girl" was at first confusing then restricting and later, depressing. If I was okay today, I couldn’t tell how I’d feel tomorrow. Fun fact number one about chronic ailments: they make their presence felt when it’s usually least convenient. I could never preempt my next episode.

Before parties, my friends would call me asking, "So what do we do about your food?" On the occasions I did agree to eat out on, the restaurant had to be carefully picked, hours in advance. At the restaurant, I took the longest to order. Prawns, too spicy. Béchamel sauce, too heavy. Lightly fried, too oxymoronic. My culinary life followed on close heels by my social — and later love — life, was over.

A year into "being ill", I wept uncontrollably in my bed — I was unemployed, deflated by self-pity, and exhausted. But mostly, I was lonely. Sure, I had a barrage of concerned friends, a patient boyfriend, and family around me, always checking up on me, always asking how I was doing. But the thing is — and here’s fun fact number two about chronic ailments, pain is lonely. Pain can rarely be halved. Your pain is your pain, and no one else’s.

***

The gut is an organ system as diverse as the brain. In fact, the gut, for long misunderstood in anatomical studies, is also referred to as the body’s second brain. When she was 17, a young woman in Germany developed sores all over her legs. Misdiagnosis led her to do her own research. Turned out her skin condition was an intestinal problem and not a dermatological one.

Giulia Enders today is the author of a little-known bestseller called Gut: The Inside Story of Our Body’s Most Underrated Organ. Part of Enders’ book, in simple and often child-like prose, talks about the gut-brain relationship. How gut bacteria can be a contributory, if not a causative factor in anything from depression to obesity to Alzheimer’s. I came across Enders’ book long after I fell ill. But it did, although belatedly, put many things in perspective. Fun fact number three: if your gut isn’t working right, nothing else will.

When I finally figured out that the source of all my woes was something called Helicobacter Pylori, my first reaction was: "Helicopter what!?"

Helicobacter Pylori or H Pylori is a helix-shaped bacteria that resides in the intestinal walls of the human stomach. H Pylori is transmitted by water (my gut feeling — pun intended — says it was a pale glass of mosambi juice consumed from a stall plastered with pictures of fruit and doe-eyed human babies in Sarojini Nagar), and is known to be the leading cause of severe and chronic gastritis and on rare occasion, stomach cancer.

Thousands of Indians suffer from it today, and probably, millions don’t know they do — it’s ill-researched, and probably the nastiest thing you haven’t heard of. Gastritis, it was long believed, had psychosomatic origins, caused almost exclusively by stress.

In 2005, two scientists, Barry Marshall and Robin Warren were awarded the Nobel Prize in establishing the — up until then scorned — link between H Pylori and gastritis. Stress could be a contributory factor to digestive ill-health, but could it ever be the sole cause?

I had been treated for H Pylori twice before but because the medicines had never worked, all my doctors (twelve, and still counting) insisted it couldn’t be the problem. Probably because H Pylori resides in the stomachs of half of humankind. Yes, your stomach, and yours, and yours too. But it might not affect you, the way it affects me.

In Gut, Enders tells us how the "50,000-year-old bacterium has evolved in parallel with us. Each Helicobacter bacterium is as unique as the person carrying it. These bacteria adapt to the host, and change as she changes." An intensive "triple therapy" antibiotic treatment is believed to be the cure for H Pylori — and if we go by the book, if that doesn’t cure you, it’s probably something else you’re ailing from. And here is where I disagree with makers, believers and perpetrators of modern medicine. You can do ten courses of triple antibiotic therapy for H Pylori, and still not be cured.

Why? Because H Pylori has a powerful dual coping mechanism — structured in such a way that it can not only lodge itself into the inner stomach lining and hide but can also neutralise any acid surrounding it, so beneficial for human digestion. And when does it get the better of you? On three occasions: one, if you have a history of frequent antibiotic use. I did. Two, if the bacteria, as it fights the medicine, manages to develop a resistance to it. Mine had. Three, if you’re plain unlucky. I clearly was.

***

Chronic illnesses result in patterned human behavioural responses. Acceptance is the last but one of many phases. To get there, however, one must first go through the stages of denial, grief, anger and a sudden searing will to fight it. I’d call the last one desperation. And that’s exactly what I was: desperate. So when conventional schools of medicine failed me, like any respectable millennial, I fell back on the internet.

But unlike all the other respectable(?) millennials, I wasn’t swiping away at Tinder, or hashtagging what #LifeBeLike on Instagram. In the deep recesses of the world wide web, I came across my brethren, scattered across the globe, united by one helix shaped bacterium. So many people had it, and so many people were dealing with it. Not in a "you have H Pylori, so deal with it" sort of way — but really dealing with it, trying to weed it out of their systems.

During those months, I boldly experimented (and I probably shouldn’t have) with a variety of treatments, all self-prescribed. I looked up the recommended “natural” medicines common to all the blogs: a bottle of honey from the wilds of New Zealand; a gum, an extract from a rare tree found only in Egypt; a bag of tea, which went from South Africa to New York to India, now all sat atop my desk at home in Guwahati. I placed them side by side, took out my phone, and clicked a picture. This could very well be the medical miracle I was waiting for. It wasn’t.

***

Though over time I did begin to feel better. I consciously began to live a healthier life: copious amount of probiotics were consumed, the day would start with a pod of raw garlic (for physical immunity) and end with a cup of specially brewed herbal tea (for mental peace). Buttermilk was the elixir of my life. My handbag, I believe, could rival Hermione’s purple beaded one: bananas, liquorice, cardamom, whatever was on the other side of the pH scale was in my bag.

The truth, however, was that I was far from being cured. There would be days still when I was confined to bed. The ever so familiar pain gnawing at my stomach. Hello darkness, my old friend. I lived and walked on eggshells — my friends would often joke about my "real age". Was I 26? Was I 76?

At some points even I didn’t know. What I did know was that my body was my temple, and my loyalty to it was unwavering. My body decided when I should sleep, what I should eat, if I should go on a holiday, and whether I was ready for a full-time job. I woke up one foggy December morning with my right eye twitching. It twitched uncontrollably throughout the day, and week. A frantic Google search convinced me that it was the onset of Parkinson’s. It was nothing. But I had made huge progress from the weeping-into-my-pillow days of dark depression. When it comes to being chronically ill, knowledge is power. I was and continue to be fiercely knowledgeable about medicines (all brands) and illnesses (all kinds).

I would judge my friends who’d binge on alcohol on weekends, who kept refrigerators bereft of fruit, who’d skip breakfast because they were *cue for a scathing eye-roll* late for work. The best part was that I had finally accepted that my illness was permanent, that it was here to stay. And despite that, I had finally learned to live. The worst part? I was living according to its terms and conditions. ***

When I finally summoned up the courage to go into therapy in March 2016, I was skeptical. Until the day my therapist told me that my body was stupid.

"Let your mind lead," he said, "because the body can be trained." So, in the weeks to come I began to train my body. I drank (alcohol), I ate (spicy food), I travelled (out of the country). I ran (persistently), I swam (awkwardly), and when my body protested, I ignored it. And then just like that, one day, my body began to listen to me.

The body, if you let it, is capable of amazing things. The body is self-healing: if you give it enough time and a gentle push, it can rise, like the mythical phoenix, from ashes. Stress, though sometimes an excellent performance booster, is the single most destructive thing for your body. Stress impedes its self-healing mechanism.

Stress, even if clichédly so, simply isn’t worth it. Relax. Let go. Breathe. Trust me, it’s not overrated. My new found sense of bravado didn’t mean I gave up my old smoothie-drinking habits. Seeing cold-pressed juice line shop counters still fills me with a misplaced sense of excitement. But today I’m less terrified of a spicy tortilla. True, my stomach still burns after eating it — but does that mean I pitifully retire to bed, and cancel all plans I had for the day? No.

Simply because I know that tomorrow it might not. A chronically ill patient has to accept that there will be good days, and bad. But well, so does the rest of the not-chronically-ill humankind. Do I miss being healthy? Of course, I do. I long for the days when good health wasn’t a privilege and food was well, just food — sometimes delicious and sometimes not. I often find myself wondering if there will ever come a time when I can get through the day without thinking about my body even once.

In 2015, in another act of frenzied desperation, I found myself in a naturopathy centre in Udupi. For ten days, we lived like prisoners. Here Orange is the New Black met Mallory Towers, in the worst way possible (think prison bullies and teachers’ pets under one — creaking Mangalore-tiled — roof).

We’d wake up at five to do yoga, wait in line with utensils to be served unappetising sattvic food, wash said utensils thereafter, pour water into nostril A and force it out of nostril B, and occupy the rest of our day contemplating the pros and cons of a buttermilk enema. Most people hung around for weeks, keen desperate to lose weight. Pretty obvious that the 38 kilos of my entire existence wasn’t taken too kindly there.

On day one, I walked into a steam room, stripped down to the bare essentials (detoxification is best done disrobed, apparently).

"So, why have you come here?" Enveloped by a thick cloud of steam, I could make out the outlines of three women.

"S-stomach problem." I sit down next to them.

"We were thinking weight loss." They laugh.

"Size zero," says the one nearest to the door. They laugh again.

I join in, "Size negative." And I laugh with them this time.

The body is stupid. In more ways than one.