The Year I Couldn’t Roll My Eyes—and Other Tales of Life with Chronic Illness

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The Year I Couldn’t Roll My Eyes—and Other Tales of Life with Chronic Illness I used to hide I have multiple sclerosis. I didn’t realize what I was losing by not being seen BY ARDRA SHEPHARD

Published 6:30, August 16, 2025 Photograph by Alkan Emin

I slink into the office. Late. I’m in a touched-up version of last night’s makeup, so I’m counting on my fresh-from-the-cleaners blazer to make me look pulled together. My left eye hurts in what feels like a hyper-localized, concentrated third-degree hangover. I throw back two Tylenol and take a long sip of the extra-large coffee I’ve been hiding behind my oversized bag. This isn’t the kind of workplace you can saunter into after 9 a.m. flaunting the fact that you made time to stop at Starbucks.

Approaching my cubicle, I see the phone light up before I hear the quiet trill that is currently my least favourite sound. It’s the head micromanager, my boss. He wants to see me in the corporate anteroom. I check my watch: 9:12 a.m. It doesn’t matter that I worked until 7 p.m. last night.

My security pass doesn’t give me access to the executive wing, and I have to be buzzed in like a nobody. The anteroom smells like synthetic vanilla and feels like a more expensive version of the “good” living room your grandmother never uses. I steel myself for another lecture about how my workday starts at 8:55. But my boss greets me with a warm smile instead.

The company would like to offer me a promotion. The dot-com boom is driving growth, and they need someone who speaks French. The details don’t matter. I’m getting a bonus and a raise. I’m even getting an award for the work I’ve been doing. I can bring two guests, which will obviously be my parents. Unless there’s an open bar, there’s no way my friends would sit through speeches just to watch me get a prize I don’t deserve for doing my non-sports-related job in suburban Southern Ontario.

I’m not remotely qualified to work in finance. It’s not imposter syndrome. I am an imposter. I live in my overdraft and still use my fingers for basic math. I don’t have a business degree. I haven’t even finished my arts degree. This gig was only ever supposed to be a placeholder. An income until my real life starts. I don’t want a future in this fluorescent-lit corporate purgatory, though it does feel good to be recognized? I try to hide my surprise, but my boss clocks it. He tells me I’m smart and that management sees my potential. He calls me a “real up-and-comer.” He puts his hand on my shoulder and tells me that from now on my day starts at 8 a.m.

On my way back to my cubicle, I stop at my best friend Tracy’s desk to see if she can give me a handful of Advil. The Tylenol hasn’t kicked in, my eye is throbbing, and I figure I must have more of an ibuprofen hangover than an acetaminophen one. While she searches her purse, I spill the news that five minutes earlier I’d promised to keep confidential. She’s less impressed than I thought she’d be. “Don’t get attached to the money. It’s a trap that will keep you from getting out of here. Let’s hit the mall after work and set that pay bump on fire.”

I do want out of this confining cubicle and out of this boring town. The worst possible future for me is an ordinary one. The idea of a minivan, a picket fence, and buying groceries from Costco to feed my two and a half kids gives me hives. I want to see the world, to live in cosmopolitan cities surrounded by creative people and original thinkers. I’m determined to live a life of excitement, of purpose, of dreams.

More specifically, I want to be the next Maria Callas. When I’m forced to work late, I sing scales in the bathroom. I can’t afford to go back to school to study opera properly. I don’t have enough disposable income to blow on private lessons with a top singing teacher either, but that is exactly what I do. Every Saturday, I write a probably bad cheque for $75 and make my way from Hamilton to the north of Toronto. It takes me two and a half hours on a bus, a train, a subway, and another bus to get to my teacher’s studio. I get a hot dog from the street vendor between the GO station and the subway, because I am not an adult. I spend rent money on private acting lessons from a sketchy out-of-work actor and grocery money on headshots (and let’s face it, vodka shots), but none of it is enough. Nobody becomes an opera singer in Hamilton; I don’t care how many Italians live here.

I have a dream, but I don’t have a plan. I’m twenty-three; I still have time to make mistakes and figure my shit out. At least, I think I do.

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W eeks later, my eye has not stopped hurting, and I’m forced to admit it’s not a hangover. Maybe I got something stuck in there? Can migraines live in your eye? It’s okay if I look straight ahead, but if I move my eye even slightly, it feels like I’m being stabbed. This is especially problematic because rolling my eyes is an essential communication skill that I’m unwilling to abandon.

I’d convinced myself that whatever’s going on with my eye would eventually go away on its own, but on the day of the award ceremony, it’s not just pain—my eye now feels like it’s coated in Vaseline. I rub away the blurriness, but I can hardly see. I curse myself for not having replaced my mascara since the 1990s, but for some reason, even my cursing doesn’t sound right. I curse again, louder, and realize my hearing is muffled in my right ear. This is incredibly inconvenient. Obviously, I don’t have a migraine. It must be a sinus infection or the flu.

I walk from my Westdale apartment to the emergency room at Hamilton’s McMaster hospital, resigned to the fact that I’m going to have to hang around for hours just to get some antibiotics. Smartphones have yet to be invented, and texting is still in its infancy; it’s like banging out Morse code on my flip phone. Not worth it. There’s nothing but old issues of Canadian Living and Chatelaine to peruse with my “good” eye, and the anxiety of possibly missing the award ceremony, to keep me occupied.

My blood is collected, I have a CT scan, and I indignantly pee in a cup, as if something in my urine could possibly have anything in common with vision loss. It all feels like overkill. I’m passed around between nurses and technicians for hours until I finally meet with the doctor. He turns out to be a gentle and sympathetic older man who tells me all these tests are to rule out the bad stuff. I take him at his word. I have no reason not to. Later, I will remember his kindness. I will realize he knew.

Finally, I’m released and told to come back the next day to see a neurologist. I’m more annoyed than alarmed—I don’t want to spend another day in a waiting room. I have roughly fourteen hours of my own precious ignorance left.

M y mom insists on coming to my appointment with the neurologist. I didn’t ask her to be here, but I guess she wants to hang out. When the nurse calls my name, I leave my mom in the waiting room, because I have no idea that my life is about to implode.

I’m asked about symptoms I’ve never had. I’m forced to pee in a cup, again. I’m subjected to increasingly bizarre tests, including a “touch my finger, touch your nose, close your eyes, and turn yourself around” hokey-pokey that makes me wonder if I’m being punked. When the doctor opens a safety pin and drags the sharp end across the bottom of my bare foot, I start to think med school must not be as hard as I’ve been led to believe.

When the exam is over, the lights don’t dim, music doesn’t start to play. Nobody takes my hand or says, “I think you’d better sit down.” Granted, I am already sitting, but there is no warning about the bomb that’s about to be dropped. I’m completely unprepared when the doctor unceremoniously declares, “You have optic neuritis, and there’s a 50 percent chance you have multiple sclerosis. MS.”

My stomach turns itself inside out, and my heartbeat relocates to my face. I have no idea what optic neuritis is and, in fact, refer to it as optic neurosis the first fifty times I say it. As for MS, I know only it’s bad—catastrophic, despite the doctor’s confoundingly neutral tone. I find no comfort in the fifty-fifty odds. I skip right past denial and start to cry so hard I can’t catch my breath. The doctor leaves without closing the door behind him. My meltdown isn’t private, but I am alone.

Eventually, a nurse sticks her head in and asks if I want her to get my mom, as if this isn’t obvious. When my mom arrives, she has not been briefed. I am angry that I have to deliver the news to her myself—I’m the one who has to tell my mother her daughter might have MS.

Norma takes the news more calmly than I do. She typically has a “What do they know?” and “Who do they think they are?” kind of attitude to most authorities, and she immediately latches on to the 50 percent possibility that it is not, in fact, MS. It’s a very on-brand response for a woman whose guiding principles include a combination of optimism and wilful ignorance of unpleasant information. I’m not convinced or soothed. I’m not prone to assuming the worst, but I can’t get past the sickening feeling that this is real, that this is happening.

While we wait for the results of an MRI, it’s a surreal seven weeks of knowing that MS is a threat but not a guarantee. People tell me they’re praying for me, as if there’s still time to change what has already been set in motion. My family expresses relief that a diagnosis won’t ruin Christmas. A friend insists that pretty people don’t get MS. My boss assures me I can’t possibly have MS, because the Good Lord wouldn’t let something like this happen to someone like me. I am inundated with the conviction of those around me that MS simply isn’t an option.

By the time my follow-up appointment comes around, I’ve developed numbness in my toes and on parts of my face. I’ve been losing my balance, and I can’t seem to walk in a straight line. I’ve spent enough time on the internet that I don’t need test results to know that I for sure have MS. When the doctor shows me the six white spots on my MRI that confirm the diagnosis, I crack a joke. On some level, I already have a sense that one of the burdens of being sick forever is to let others know I’m okay.

I ’ve been keeping my diagnosis on the down-low for a number of years now, but of course there are people in my inner circle who know all about my condition. From time to time, one of my friends or even someone in my family will say some version of “Sometimes I forget you have MS.” The observation is meant to be a compliment, and for a long time, that’s exactly how I received it.

There’s something intoxicating about “passing” as someone who isn’t defined by chronic illness. Staying silent means I can be Ardra, instead of Ardra-with-MS.

It’s not just me. More than one-third of people living with MS keep their diagnosis classified. But keeping secrets is stressful, and in addition to being accidentally outed from time to time, MS tries to reveal itself in ways that those of us who live with it don’t always recognize as our “tells.” More than once, I’ve been asked about my fancy walk or why the fonts on my phone are so big you can see them from space.

It doesn’t help that I’m not good at intrigue. I talk a lot and am not exactly known for being the mysterious type. Passing for non-disabled takes effort and can lead to strange behaviours that I haven’t yet figured out how to mitigate. Like the time I was out for lunch with a new friend. At the time, I was still learning to self-catheterize and spent forty-five minutes in the bathroom looking for my urethra. When I finally came back to the table, I offered absolutely no explanation for my extended absence. My friend probably thought I had diarrhea, but then I ordered dessert.

There was also the time I’d been hired to sing for a production of Riverdance, with a live band. I lost my balance at a rehearsal and landed flat on the drum kit. Very rock and roll. I apologized profusely but gave no reason for my sudden collapse. The band probably thought I was drunk, and that still seemed better to me than sharing the truth about my MS.

Then there was the European choir tour, and like everyone else, this time I actually was drunk a lot of the time. Tour bus–induced motion sickness, combined with the amount of rest and the number of early nights I needed, led to rumours that I was pregnant—rumours I didn’t bother to correct. I was more comfortable being thought of as reckless and irresponsible than I was in copping to MS.

The concept of “passing” has various social contexts, most notably within racialized and LGBTQIA+ communities. People with MS are marginalized in different ways but have often felt the need to hide an identity over which they have no control. Many fear how disclosure of an MS diagnosis will impact careers, relationships, and safety. People with MS risk being isolated, stigmatized, and seen as less-than. Just like racism and homophobia, ableism exists.

For many with MS, the “should I or shouldn’t I” decision can cause anxiety and depression. I know of at least one woman with relapsing MS—a doctor—who told her spouse she was diagnosed with a less serious condition out of fear that her partner would leave her. Of all the burdens of this disease, shouldering it alone, without the support of loved ones, adds a whole new layer of hardship.

It’s not enough to be told that the world will understand and that the law is on our side. Because, is the law really on our side when there are systems in place that keep disabled bodies out of sight? When inaccessibility is standard, medications and medical equipment aren’t affordable, and people with disabilities regularly have to fight for benefits and opportunities? It can be terrifying to tell someone in a position of power or influence that you have MS. “Able bodies are better than disabled bodies” is something you can still say out loud and not get cancelled. You might even believe it yourself.

It’s equally acceptable to make disability the butt of the joke. If you think I’m being dramatic, let me remind you of TikTok’s viral New Teacher Challenge where parents—PARENTS—pretend to introduce kids to their teachers over Zoom using photos of adults with congenital facial differences and other disabilities. The kids often respond with fear and/or tears while their parents and TikTok viewers laugh mightily.

The desire to be included is powerful. Human beings have a need to fit in. Disability is the largest minority in the world, and yet we haven’t found safety in numbers, let alone pride in identity. So many people are afraid of being “found out” and seen as damaged, broken, sick, less-than. Maybe this sounds hyperbolic, but it’s hard to acknowledge membership in a group that almost no one wants to be a part of. It’s difficult to claim status in a society that has a hierarchy of bodies and that values productivity and so-called perfection above all else.

And so, if we are able, some of us hide our MS from strangers, co-workers, even from the people we depend on for survival. Sure, passing has its privileges, but I’m starting to see the damage passing can do. For one thing, keeping quiet leaves us to fend for ourselves, without accommodations. Lack of support can lead to frustration, fatigue and a reduced ability to perform the tasks of daily living. But keeping quiet can have deeper consequences too.

When we don’t feel safe enough to disclose our MS, we end up reinforcing the message that we have something shameful to hide. Even the language around sharing a diagnosis as something to be disclosed suggests there’s something sneaky going on, something that needs confessing.

Coming out with MS is a process. It doesn’t just happen once but over and over again, depending on the situation. I don’t owe anyone an explanation of how I move through the world, especially when there’s enough evidence to prove disclosure is not always in my best interest. But as long as MS is my sick little secret, I will never truly be free to be myself. My sense of security and safety depends on maintaining a lie. When the status quo goes unquestioned, saying “That’s not me; I’m not one of those people” perpetuates the stigma around chronic illness. It suggests that disability is a choice, a lifestyle one can simply decide to opt out of.

“Sometimes I forget you have MS” suggests that I am the “right” kind of patient. Someone who doesn’t complain too much or ask for too much help. “Sometimes I forget you have MS” is only truly a compliment if remembering that I have MS is an insult. Saying “I have MS, but don’t worry, it doesn’t really affect me” is not the same as having the confidence to say “I have MS, and I have a right to be meaningfully included.”

Although an MS diagnosis is still perceived as a liability, I’m starting to appreciate that one of the unexpected burdens of this illness is to recognize social injustice and to try to resist it—try to change things. Not just for myself but for the communities I am part of. Being accepted for who I am starts with accepting myself.

Adapted and excerpted, with permission, from Fallosophy: My Trip through Life with MS by Ardra Shephard, published by Douglas & McIntyre, 2025. All rights reserved.

The post The Year I Couldn’t Roll My Eyes—and Other Tales of Life with Chronic Illness first appeared on The Walrus.