How My Body Spoke to Me in Sickness

On the eve of Malaysia’s first lockdown last year, a dull ache pulsed on the left side of my neck like an omen. The discomfort soon bloomed from the base of my skull to my shoulder blade, before slowly coursing its way through my arm. But I muffled my unease by focusing on a world under viral assault. The pandemic made it easier to quiet my own issues, both to myself and to everyone else.

Edging toward breaking point, and the accompanying frustration at a body that lets me down, has become a recurring event in my pandemic year. The most alarming sensation was a loss of feeling in my left arm, which began one night while reading before bed. Two months after that first hint of pain, it was only the shadowy fear of paralysis or nerve damage that compelled me to see a doctor. My reluctance relied on the prickly belief that our anatomies and minds can withstand whatever we want to put them through. But they can’t. And there are often murkier reasons for why we quietly endure avoidable pain in the first place.

Mid-May during Ramadan last year, the fasting month for Muslims like myself, an orthopedic doctor pointed to ominous dark marks on a scan of my spinal column. My mouth was dry from no food or water, and as I inched toward the monitor, heavy breathing suffused my mask. The doctor intently switched his gaze between me and the screen as he delivered the diagnosis, light glinting off his face shield each time he turned. We looked at each other squarely in the eyes—they were the only parts of our faces unhidden, after all—and I wondered what emotions he could read in mine. If he could see my stress, he didn’t show it.

The fluid inside three of the cervical spine discs in my neck was gone, a phenomena known as disc desiccation, meaning the discs were significantly less effective at absorbing impact between my vertebrae. Research shows this kind of spinal degeneration is common as you age, but many factors can cause early-onset—I’m twenty-six—from physical injury to weight fluctuation. My spinal discs had likely been dehydrated for a while, and it was unclear what triggered the pain. Regular physiotherapy and medication could alleviate it, but the decay remains irreversible.

“What’s gone is gone,” my doctor said as if it were the simplest of truths. Parts of our bodies die and never come back.

I left the consultation room feeling stunned that this would last for the rest of my life. Exaggerated (and unfounded) visions of immobility and a debilitating old age marched through my mind as I passed through the hospital’s corridors. My body chose the worst, or perhaps the most apt, time to broadcast its perishability. I wondered if my joints were reacting to pandemic-related dread. Standing outside the physiotherapy department, medical report in hand, two thoughts struck me: Please let physiotherapy help, and please don’t let me catch Covid-19 while physiotherapists help me get better.

Like many patients, I chose daily discomfort over risking virus exposure. But that’s not the whole truth. I, along with many other internet-powered millennials, was buoyed by the thorny view that this was the time for reflection and productivity. Alongside the slate of depressing health news, social media motivation gave me hope, and it became an obligation to be hopeful. It was imperative to seek self-improvement if you could afford to, and I was convinced that I could handle it all—including healing myself.

During Ramadan especially, abstaining from food or drink from sunrise to sunset was a triumph each day. Combined with the month’s emphasis on deliberation, constant pain was just another thing to endure. I was hyperaware of the throbbing discomfort along my left side, but I also felt most willing to bear it. I deserved the light suffering. Besides, I was grateful for paid work, living somewhere spacious, and access to medical care if I needed it. A positive outlook, I told myself, meant I didn’t need professional help. Nonetheless, the numbness had forced my hand and exposed my body’s fragility.

A positive outlook, I told myself, meant I didn’t need professional help.

I trusted doctors to strap my neck into strange contraptions and pump all manner of invisible waves into my body. Eventually, the roaring discomfort quieted to the occasional murmur. But shortly after the neck pain eased, about a month after Ramadan ended, the hair fall began.

Unusual amounts dappled the bathroom floor, the bedsheets, the yoga mat. When I slept over at a friend’s house for her birthday, I remember how my fallen hair speckled the pillowcase. I tried to collect and throw away every strand obsessively because I didn’t want others to see. I scrutinized selfies and compared old photos to determine how much hair I was losing. I repeatedly asked people if it was obvious. Most said no, but I didn’t believe them, especially after my mother said yes.

“You’re going to stay,” I started to say to myself in the mirror each morning, directed to my hair. As if that would do the trick.

One night at dinner, when my family asked if everything was okay, I put on my brightest smile and shrugged. I looked at the floor to deflect their concern, but the floor sucked me in. Every time someone asked me how I was, whether over a Zoom meeting or a meal, I felt an immense urge to press my cheek against the ground in the hopes I’d sink away. An undercurrent of self-loathing drifted against my thoughts, and it felt like I was wading, very slowly, through a cloudy sea.

Even then, I still believed I could fix everything on my own. Having just come off months of physiotherapy, I was reluctant to seek more medical help. Old traumas wore away at me like the chipping of a stone, but there was already enough sadness and sickness with the pandemic. There seemed no place for mine.

The news told me it was okay to feel awful and seek help. With every new app and podcast and social media post, help seemed to be everywhere. Social media told me that gratitude, meditating, and journaling—three things I’ve long practiced—would improve my mental and physical wellbeing. So I continued voraciously.

At midnight, when work was over, I’d lock my bedroom door and open the safe that contained two decades worth of journals. In a dark green armchair by the bed, knees to my chest, memories swam across old pages of handwriting.

Today I feel raw and drained and low, I read from March 20, 2020. Disheartened, I skipped the sad parts and flipped to happier days. Life remains wonderful and I feel safe within myself, I had written on September 30, 2019. I continued searching for brighter points. My mother recently told me I was eerily good at hiding my unhappiness, even to myself. And still, I enthusiastically moved to my desk, prepared to write my feelings away.

As I scribbled late into the night, telling myself to get it together, I spent all my words urging myself to move forward without acknowledging it was okay to be where I was.

I must get better, I wrote on June 22. But I feel sad, want to sink into the ground, want to be swallowed by something, and yet and yet and yet I don’t want to make anyone else sad, I just want to get better, or maybe the issue is that I don’t know what vision of a future I’m looking for.

*

I sat in a hairdresser’s chair and stared at my masked face in the mirror. Salons had finally reopened in Malaysia, and a stylist combed through my limp-looking mane. He commented that my hair seemed half the volume it used to be and asked if I was all right. My chest winced. It had been months since my moods began plummeting. I shrugged and kept my eyes staring straight ahead into my own reflection, thankful that half my face was covered.

But the mirror still returned my wide eyes, disquieted that someone sensed my unraveling. Distressed that my body had made it clear. As the stylist trimmed my hair, thoughtfully offering advice on scalp treatments, I wondered if the customers around me were listening, judging me for my hair loss.

It was different during those days of Ramadan at the height of lockdown. Even though I was starving and thirsty with neck pain, conditions particularly astute as I continued to exercise, no one else could see my discomfort. Alone in downward dog, blood rushing to my head, it was easy to inwardly valorize pushing my body’s limits.

I finally saw an endocrinologist to check. The symptoms, including the hair loss and fogginess in my mind, were linked to a thyroid issue where my brain mistakenly releases the wrong amount of thyroid-stimulating hormones. While it wasn’t the root cause of my depressive behavior, the thyroid issue could keep my moods low. I was relieved the chemical imbalance was treatable, but more concerned that my inner instability perpetuated the condition. During a family Zoom call, I was embarrassed to admit to my own siblings that I’d need daily medication for half a year. My cheeks burned up when it was my turn to speak, and I mumbled about a thyroid issue without offering too many details. I didn’t want them to ask too many questions.

When December came, a few months after the diagnosis, the veneer finally cracked. I sat in my best friend’s room, hunched and exhausted from relentless months of work and what felt like an entire year of being sad and sick. Next to my oldest and closest companion, I had no energy to keep pretending, but I was still consumed with self-loathing when the tears wouldn’t stop. I hated that I took up space on her couch, that she had to listen, that I needed medicine.

“It’s so pathetic,” I said out loud.

She looked at me, incredulous, and said emphatically, “Aisha, that’s absurd.”

And suddenly, it was. The absurdity of all my thought processes, punishing myself for being unwell, hit me hard. I struggled to admit I was sick because I was ashamed.

I struggled to admit I was sick because I was ashamed.

In scientific literature, shame is considered a “self-conscious emotion” because it involves an evaluation of the self, usually as incompetent and worthless. Ironically, it is typical to feel ashamed of shame. As famed vulnerability researcher Brené Brown writes in her book Daring Greatly, “Shame derives its power from being unspeakable.”

Recently, when episodes of unnerving vertigo pummelled me daily for three weeks, I didn’t see a doctor until I fell several times in front of someone. Having yet another illness felt plainly pathetic. And when tests showed I had a benign chronic vertigo disorder, again with no apparent trigger, I believed there was clearly something wrong with me. I felt ashamed of a body that made my inner weakness manifest.

I know now that this thinking is irrational. That being ill is not something shameful. I’ve slowly reminded myself that the outward concern of my family, friends, and acquaintances is built on genuine compassion, not thinly veiled judgment as I’d always feared. But it doesn’t escape me that with a renewed wave of lockdowns and deadening statistics, sickness is explicitly tied to shame. We are living in a time when sickness instinctively leads to probing questions about how it happened, the way it burdens others, and our irresponsibility for not preventing it, rather than how to help that person get better.

I am trying now, one year later, to take my body’s cue. In January, my physiotherapist touched my neck at the very point where the pain first blossomed almost a year ago and asked if I knew what triggered the latest ache. I replied openly that I’d been mentally unwell and stressed at the beginning of the month, and maybe that was a factor. For the first time in a long time, I felt no shame. It doesn’t really matter to me anymore whether the blame for bodily pain is physical or psychological. What matters to me is listening to my body when it is in pain at all.

As I pave the way forward, determined not to hide from seeking help and just accepting what it takes to get better, I think I have stumbled on something that makes me proud. I thought my mind could trick my body, but my body was smart enough not to be fooled.

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