I Stayed At Work While Miscarrying. What I Learned After Shocked Me

It was late at night at the airport where I was waiting to be picked up. Red and white lights twinkled from airplanes, from towers. I was tired. With my carry-on in one hand and my work bag in the other, I searched the line of cars as blood soaked through my pad.

“Can I go through that?” I asked the TSA agent at the body scanner, three days earlier. “I’m pregnant!”

I had just found out I was halfway through the first trimester. I didn’t know what to tell my friends and family, but I loved to share the news with strangers. I’d also told the head of HR at the design agency where I worked.

“I think I’ll need an intern… or a boss?” I said.

I’d joined the agency as their 28-year-old intern, and not even a year later, I was managing all the brand strategy and copywriting projects mostly on my own, while occasionally reporting to the chief marketing officer.

“Let’s not get too ahead of ourselves,” the HR manager answered.

I told her I understood. It was the second year of the pandemic, and we’d just come off another wave of layoffs and lost business. I was grateful to be employed, and to have the health insurance that came with it, but my heart hammered in my chest whenever I thought about balancing this job with pregnancy, and maybe later, motherhood.

Sitting on the tarmac at Chicago’s O’Hare International Airport, the three days in Cincinnati stretched gloomily before me. Even so, I couldn’t deny how free I felt heading away from home.

“I’m telling you,” the father said before I left. “If you get an abortion, we’re done.”

I held my tongue a lot back then, so I didn’t mention I had scheduled one the day after my first prenatal appointment. I wanted this baby, but I was unsure if we would be able to co-parent together, or if I could figure out how to balance work and parenting on my own. And while I waited to see which reality would reveal itself first, I took my prenatal vitamins and let myself — when I usually don’t let myself — be excited.

“It’s our first trip together,” I sang to the baby in the shower in the Airbnb in Cincinnati. The bathroom’s yellow light shone on the curve of my stomach. I imagined the curve expanding and the baby growing in there. It would be a lie if I said it didn’t make me feel a little less lonely.

The next morning, I walked to the office downtown. Pregnancy meant I could smell everything. Intensely. It was a few days before Halloween, and I was overpowered by the scent of fallen leaves, the soil, the soil inside the soil, and in the air, I smelled the hints of the summer that had left and the winter that was to come.

“This is a big deal, you guys,” the CMO said. He and my favorite co-worker, a creative director, had also flown in so we could join the three men on the Cincinnati team. While the CMO and the creative director were on other projects, I’d be leading an important meeting for a new client — one of our first after a string of rejected business proposals and frozen projects.

Despite the small number of clients, we were still swamped with work, and through the course of the day, the in-person meeting was moved to Zoom, and, one by one, the Cincinnati team could no longer attend the call.

“It’ll just be you,” the CMO said.

“All good,” I answered, and gave my stomach a small hug. I pictured the eyelash, the lentil, growing in there.

“No, you all go ahead. I don’t really want to go out,” I tried to beg off. My legs ached, and I longed to go to bed, as happy hour plans were being made.

“Why? Are you pregnant or something?” the Cincinnati designer asked. Evading a direct answer, I smiled and kept smiling as we went from bar to bar, the sticky beer smell running rancid in my nose.

I woke up the next morning and something was off. My heightened sense of smell — it was gone. I went to use the bathroom and heard a splash. What had fallen was brown, and small, and shaped like a thumb. Blood spun like lace in the water.

No amount of research convinced me whether this was “normal light spotting” or something more serious, so I slipped a pad on my underwear and continued getting dressed. I zipped up my carry-on and lugged it behind me for my flight later that day. At the office, I replaced my blood-soaked pad with another.

Looking back, I couldn’t tell you how long I waited at my desk, trying to decide whether I should or shouldn’t go to the hospital, or if I could or couldn’t lead the meeting first.

“And I’ve already emailed you my notes,” I rehearsed to myself, imagining myself asking for help. But the longer I deliberated, the more I lost my nerve. My Outlook chimed: 15 minutes.

Most of the meeting is blotted out from my mind — how I introduced myself, what we talked about.

“Let me just email you some examples,” I remember saying again and again, trying to offer something to end the meeting. After all, this brand is their baby, I justified to myself.

The creative director held my hand in the Uber on the way to the ER.

“Should we have brought our bags?” I asked.

“Don’t worry about that now,” she replied.

So much about being a woman is waiting: waiting your turn for a promotion, waiting for the right time to bring something up in your relationships, waiting in hospital beds everywhere — if you’re lucky enough to make it to one.

There are about 1 million reported miscarriages in the United States every year, and there have been over 100 reported cases of pregnant women being turned away from emergency rooms since Roe v. Wade was overturned in 2022.

“Has it always looked this way?” the ER doctor asked me. The speculum he’d pulled out from between my legs was dripping with blood so bright it looked fake.

“I don’t know,” I answered, panicking. “I was working.”

He left to take the sample to be tested and I received an ultrasound. As I was wheeled out, I craned my neck to check the screen. I didn’t know what I was looking at, but my body knew before my mind that something was wrong.

“We took a peek at the ultrasound,” the nurse said gently, the ER doctor at his side.

The creative director and I waited.

“There was a sac, but not a fetus.”

It was a blighted ovum, a type of miscarriage where there’s not enough genetic material to turn the egg into an embryo.

“There was nothing you could do,” the ER doctor told me.

Nothing? I could have done everything differently. I thought about the six weeks I had been pregnant without knowing. And before that, all the years I treated my body as if it were a machine. The skipped meals, the endless caffeine. The nights I stayed up late, and the mornings I woke up early, or the hours in between spent tossing and turning, thinking about work, as my heart and mind raced. And for what? To design packaging — which, if we’re being honest, is just more landfill.

“You’ll have to stay so we can make sure all the tissue comes out and you don’t get an infection,” the doctor added.

I felt the creative director trying not to check the clock on the wall, the same one I’d been staring at for hours.

“I don’t think we can wait,” I answered. “Our flight is this afternoon.”

We made it to the airport in time for me to change into sweatpants in the bathroom. As I threw my blood-stained tights into the trash, I realized what was off about the gaping black oval on the ultrasound. I hadn’t been bonding with a baby. I had been bonding with nothing.

The sky was bruised blue when I woke up in my own bed the next day.

“Take all the time you need,” the HR manager’s message read. Empty words, and we both knew it. I pulled my laptop into bed and emailed the client like I promised I would.

Then whole days went by where I watched the sky lighten and darken through the rips in the blinds. I stopped bleeding on Halloween and the laughter of the trick-or-treaters floated up to me through the window. The father held my stomach while we slept, and it was one of the last moments of tenderness we had.

It would take months to change jobs and leave the father. Near the baby’s due date, Roe v. Wade was overturned.

“Having it all is like toxic masculinity for women,” writer and educator Lisa Mangini tells me over Zoom.

I’m in my new apartment — the first time I’ve ever lived alone — and I’m interviewing women who have had similar experiences with miscarrying at work.

Mangini was a teacher and experienced what is referred to as a “missed miscarriage.” At first, her body exhibited no signs of pregnancy loss, and it was only after receiving bloodwork that she realised her pregnancy hormones were falling. Her doctor prescribed mifepristone, also known as the abortion pill, to help her pass the nonviable pregnancy and prevent the risk of infection or other complications.

While Mangini had originally decided to wait until winter break to administer her dose, her body had other plans, and she had to cancel her class and take her pill right away.

“I pretended like it was any other day,” she says, recalling that she ordered takeout while bleeding and cramping on the couch.

“I was grateful I had an office with a door,” Sofia Ali-Khan tells me about her pregnancy loss. She is the author of A Good Country: My Life in Twelve Towns and the Devastating Battle for a White America, but at that time, she was a lawyer and had used up all her leave while moving to a new home. She had no choice but to stay at work as she suffered intense cramping and passed the nonviable pregnancy without medical supervision. “I worked the rest of the day, though,” she clarifies.

“Being a classroom teacher during a crisis is dicey — you’re responsible for 25-30 kids only one digit old, and everyone in the building is doing something, so coverage or help is hard to get,” writer and retired schoolteacher Ann Morgan writes to me in a shared Google Doc.

“I had no support from my department, none,” a PhD student who wishes to remain anonymous tells me. She miscarried during an especially stressful time teaching students and defending her dissertation at a university in the southern United States. “Mifepristone wasn’t available at my regular pharmacy, and I had to go to two others until I could finally get it,” she says. “The pharmacist actually came out and gave me a hug, saying she knew what I was going through.”

Despite the prevalence and horror of these stories, there are no nationally codified polices that recognize miscarriage as a traumatic physical and emotional event — or help those experiencing this loss to heal.

“I had generic support,” Mangini reflects, “but I wished for something more specific — ‘Here’s the policy for when you’re passing a miscarriage.’”

Ali-Khan adds, “I really wish that pregnancy came with its own set of personal leave time and money, whether or not it results in a child, so that I could have taken care of myself properly.”

“I had to use sick leave that I’d rather not have lost because of a loss,” Morgan writes, broaching the nuanced issue of whether miscarriage falls under sick leave or bereavement leave. (It should be both, or fall under its own category entirely.)

Some countries, such as New Zealand and the United Kingdom, have put forward legislation for miscarriage leave, but it’s only for three days, which is the absolute minimum a person would need, at least physically, if their miscarriage goes “right.” (Spoiler: This is rarely the case, and often there are unexpected complications that require multiple follow-up medical appointments.)

The emotional toll can be even more difficult to manage and last much longer.

“The hormonal cascade of losing a pregnancy is one of the most intense things I’ve ever experienced — like falling off a cliff,” Ali-Khan remarks.

Mangini agrees: “It was certainly one of those ‘before and after’ events that extraordinarily disrupted my life.”

The anonymous student I spoke with had her miscarriage in a similar time frame as I did (approximately a year before our interview), and we’re still brought to tears when discussing our experiences.

These stories demonstrate the vastly negative impact of miscarriage at the workplace. All of us, except for Mangini, now work in entirely different fields.

“I’m definitely more discerning [about] what extracurriculars I’ll pick up at work,” Mangini shares. “I don’t feel the pressure to achieve or the fear of missing out if I don’t apply to every single thing like I did before.”

The anonymous Ph.D. student echoes those feelings. “For the first time in my life, I’m prioritizing my rest,” she says.

The data, though burgeoning, is also alarming. A recent study found the economic devastation of miscarriage to be roughly $611 million per year in the United Kingdom. (No comparable study has been done in the United States.) Another study found that women who had miscarriages worked fewer hours the year they experienced their loss and then up to 200 hours less per year thereafter.

“Capitalism needs workers. It also needs consumers and soldiers,” wrote the feminist scholar Silvia Federici. It’s no surprise that Donald Trump hails himself as the “Fertilization President” while billionaire Elon Musk and Vice President JD Vance spout hateful rhetoric about women — calling them “childless cat ladies” or encouraging them to “breed” — without also putting forth actionable change to improve the conditions of pregnancy, childbirth and work. What’s more, these conditions have become even more dangerous as mifepristone becomes harder to come by and hospitals in conservative states turn women away while miscarrying.

Women are in a “double bind of mechanization,” Federici writes, where they are forced to contribute to today’s workforce while bearing the burden of creating tomorrow’s workforce. As this becomes more unsustainable, we’ve experienced declining birth rates not only in the U.S. but also across the world.

It’s been four years since my miscarriage. The gaping black hole of my ultrasound image still visits me, but less often than before. It changes shape: I wasn’t bonding with nothing, I was bonding with myself.

I was bringing to term a new consciousness — my true first-born — who I must raise with all the love and care I’d imagined I’d give to a baby. My grief changes shape, and my healing: they’re not only personal, they’re political, too.

S. Ferdowsi is a writer continuing her work on miscarriage. If you’ve had a similar experience and would like to be interviewed, please contact her on Instagram at @sferdowsi27. Find more of her nonfiction in Best of the Net, The Rumpus, the 2nd Story podcast and the anthology Millennial Feminism at Work.

Do you have a compelling personal story you’d like to see published on HuffPost? Find out what we’re looking for here and send us a pitch at pitch@huffpost.com.

Help and support:

  • Sands works to support anyone affected by the death of a baby.
  • Tommy’s fund research into miscarriage, stillbirth and premature birth, and provide pregnancy health information to parents.
  • Saying Goodbye offers support for anyone who has suffered the loss of a baby during pregnancy, at birth or in infancy.
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Why ‘Find A Job You Love And You’ll Never Work A Day In Your Life’ Is B.S.

“Find a job you love and you’ll never have to work a day in your life.”

Ever since I entered the workforce about a decade ago, I’ve noticed versions of this expression on inspirational posters, mugs, online memes, laptop stickers and more. The phrase speaks to the idea that if you are passionate about your work, it won’t feel like a chore or a burden, but rather an enjoyable and fulfilling experience in which you want to take part.

This is all a nice idea, but even in a job you love, is it really possible to feel like you’re never working? I spoke to career coaches, psychologists and people who genuinely love their jobs to find out what they think about the expression and how it relates to the reality of work.

It makes sense why the phrase appeals to people.

“When so many people are stressed and burnt out by work, the idea that you could have a job that doesn’t ‘feel like work’ is incredibly appealing,” said Lauren Appio, a psychologist, executive coach and organisational consultant who specialises in mental health at work. “It’s aspirational and soothing for people who live in a culture like ours in the U.S., where there is little social safety net and people typically have to work very hard to make ends meet.”

Many people have very negative relationships with their work. Gallup’s latest State of the Global Workplace report showed job dissatisfaction to be at an all-time high, along with staggering rates of unhappiness and disengagement.

“You hear about the ‘Sunday Scaries’ or a ‘case of the Mondays,’” said career strategist Ana Goehner. “Some people also believe that everyone hates their job. This expression gives people hope that finding a job they love makes their negative feelings about work go away.”

While people commonly attribute the quote to Confucius, there’s very little information regarding the origin of “find a job you love and you’ll never have to work a day.” Some citations of the expression date back to the 1980s, but it seems to be even more prominent in the Etsy era of embroidered quote pillows and inspirational memes.

“I think this mantra is almost as millennial as ‘live, laugh, love,’” said Kate Kennedy, author of the upcoming book “One in a Millennial” and host of the “Be There in Five” podcast. “I’m not sure when it became widespread, but I remember hearing it a lot in the early 2010s, whether it was a product of being post-recession, the start-up boom, or being in peak ‘Shark Tank’ America.”

Having entered the workforce amid the economic downturn of the Great Recession, Kennedy believes many young people were made to feel lucky to have any job at all.

“There comes the point of burnout where a lot of the joy is sapped from the hobby when it becomes your meal ticket.”

– Kate Kennedy

“That built-in sense of indebtedness to our employers normalised having a job you tolerated that paid the bills, so having a job you loved seemed like the most glamorous dream of all,” she said.

Meanwhile, technological advancements expanded our career options, with full-time bloggers, Instagram influencers and entrepreneurs monetising their hobbies through e-commerce and other new sources of income. Social media compounded the shift, as we saw people “just like us” showing off their flexible schedules, financial success and other aspects of these new aspirational work lifestyles.

“It’s hard not to find other people’s lives and careers more desirable based on how they portray them online,” Kennedy said. “It’s almost like the volume of options and the frequency of seeing successful examples of exercising those options created a sense of ‘elsewhere’ for careers, where during the moments you are feeling job dissatisfaction, it’s hard not to idealise doing something else.”

But the reality is often detached from the ideal.

“It’s important to acknowledge that not everyone has the luxury of choosing a job they love,” said Elizabeth Pearson, a women’s career coach and author of “Career Confinement.” “For many people, their work is simply a means to an end, and they may not find much enjoyment or fulfilment in it. Additionally, even if you do love your job, there will still be times when it feels like work ― deadlines, difficult projects and long hours can all take a toll on your energy and motivation.”

Having a job you love is no guarantee that you won't face challenges, difficult co-workers and other obstacles that make it feel like work, at least sometimes.

We Are via Getty Images

Having a job you love is no guarantee that you won’t face challenges, difficult co-workers and other obstacles that make it feel like work, at least sometimes.

Stressful situations, terrible bosses, difficult co-workers, economic downshifts and other obstacles can arise no matter how passionate you feel about your work. Thus, “find a job you love and you’ll never have to work a day in your life” is, for most people, more of a feel-good statement than a feasible reality.

“I see this idea sold to service professionals: Work for yourself and do what you love,” Goehner said. “But few people discuss the challenges of building a business and performing tasks you dislike. Few people talk about the issues you face and all the learning involved. Doing what you enjoy should be the norm, but it’s still work. You are still trying to make a living.”

Even if you have the freedom to take a leap and monetise your hobby, it probably will still feel like work at times.

“There comes the point of burnout where a lot of the joy is sapped from the hobby when it becomes your meal ticket,” Kennedy said. “The biggest issue for me when I started a product-based business was not having access to capital to outsource or hire out many of the functions to get off the ground efficiently, so it all fell on me to figure out, which ended up with me working way more hours for a lot less money than I made in my corporate job.”

The job doesn’t magically feel like it’s not work once you’ve found a sustainable way to make a comfortable living, either.

“I absolutely love my job, and I’m still beat by the end of the day,” Appio said. “It requires deep, sustained focus and active emotional processing and regulation for hours at a time. Outside of my sessions, I also complete paperwork, manage all of my billing, marketing and communications with clients and colleagues, offer consults for prospective clients, develop and deliver trainings, and pursue continuing education.”

Any job comes with difficult days, including one that overall brings fulfilment and joy. And it’s normal to not always want to devote the required time and effort to the job.

“Even when you find work you love, jobs are temporary,” Goehner added. “In our current economy, you won’t likely spend your entire career with one company and do the same tasks. Even people who dedicate their lives to their careers may have tough days or perform tasks they dislike. You do what you enjoy, receive pay and hopefully get recognised for your efforts.”

What you ‘love’ doesn’t always translate to success or happiness.

“Telling others to ‘do what you love!’ is an oversimplification. Doing what you enjoy is not enough. Doing what you’re good at ― and being willing to stick with something, even when what was fun is no longer so fun ― can be just as important,” said Gorick Ng, a career adviser at Harvard University and author of “The Unspoken Rules: Secrets to Starting Your Career Off Right.”

Consider whether you can leverage certain skills or expertise to succeed in your field.

“Maintaining the belief that work you love isn’t actually ‘work’ can create shame for people who feel burnt out or overwhelmed by work that they do truly love. This is especially common in work like health care, mental health and education.”

– Lauren Appio

“The expression doesn’t help people see possibilities based on where they are in their careers now,” Goehner said. “You can use your skills, gain new ones and find a workplace where you use 60-70% of the skills you enjoy. Sometimes, feeling a sense of expertise and having the freedom to share that at work can help you feel a sense of purpose or connection with your job.”

If you’re feeling drawn to a completely different path, give it a lot of thought and do your research. Ng emphasised that the idea of something is often more interesting than the thing itself.

“Would I like to be a musician? Sure! Can I sing to save my life? No!” he said. “And does singing the same song over and over again in a different city each week still sound fun when I haven’t been home for six months? I’m not so sure.”

“Your number one passion may not be a realistic career,” Goehner added. “I’d love to take care of baby pandas, but the likelihood of this happening is minimal. Also, what you love may not provide a decent living for yourself or your loved ones. It could be a source of income, but you may need to supplement it with another job. Love doesn’t always pay the bills.”

Even if you love a hobby like photography or baking, that doesn't mean you'll necessarily love the business of doing that hobby as a career.

Morsa Images via Getty Images

Even if you love a hobby like photography or baking, that doesn’t mean you’ll necessarily love the business of doing that hobby as a career.

Additionally, consider how you feel about the business of the thing you love, not just the activity or hobby itself.

“It’s great to have a dream job, but it’s also important to remember that you may not like the day-to-day tasks associated with monetising that dream,” Kennedy said. “I started a handmade business selling home decor where I hand-painted things, and I loved the category, I love working with my hands and being creative and I loved the idea of self-employment. But I didn’t spend most of my days doing an artist’s work ― I was mostly buried in things I was less passionate about, like shipping, fulfilment, customer service, and inventory management before I could afford help in those areas.”

Ng shared a time he met a talented photographer and asked if he wanted to pursue his art as a full-time career.

“His response surprised me,” Ng recalled. “He said, ‘I love taking photos, but I hate the business of taking photos. The minute I start relying on photography to pay the bills is the minute I’ll stop loving it.’ Be honest with yourself if you’re thinking of turning an interest into a career. Do you love the business of doing something as much as you love doing the thing itself? Not everyone will say yes to this question and that’s OK.”

The expression sets up workers for dissatisfaction and shame.

One problem with this idea about work? “It can keep people preoccupied with finding their ‘dream job’ and experiencing a chronic sense of dissatisfaction,” Appio said. “Because if your work feels like work ― as work does ― does that mean you’re doing something wrong?”

This fantasy of doing what you “love” and never feeling like you have to work can also lead to feelings of guilt or shame for those who don’t take a huge leap. This is especially true in the age of social media when we frequently see “creators” sharing all the highlights of their careers and few if any of the downsides.

“When I was in a corporate job, I wondered if I had ‘sold out’ or forwent meeting my potential by working in the corporate world,” Kennedy said. “Sometimes, it creates a fear that you actively chose to do something you don’t love when you could have followed your passion.”

There’s a sense of guilt for those who do make the choice to pursue a passion-based career.

“Maintaining the belief that work you love isn’t actually ‘work’ can create shame for people who feel burnt out or overwhelmed by work that they do truly love,” Appio said. “This is especially common in work like health care, mental health and education. Professionals in these areas may feel guilty or ‘ungrateful’ for experiencing compassion fatigue or needing a break.”

She also believes the “find a job you love and you’ll never work” expression can be used to further devalue creative or mission-driven work.

“If you love your job, people will often tell you that you ‘didn’t get into it for the money,’” Appio said. “But we all work to earn money, and even if we’d do our work for free in a different world, we all deserved to be paid well for the work we do.”

But it’s not completely off base.

“This is actually an expression that I believe in myself, and there have been moments where I lived it,” said career coach Jasmine Escalera. “The thing is, I do believe the expression needs to be tailored because it isn’t just about finding work you enjoy, but finding work that is connected to your purpose, to your passions and to your strengths.”

She believes a job that integrates the skills or tasks you’re particularly good at can make you feel inspired and as though you’re not working at all.

“The company culture is such an integral part of enjoying the work, as well,” Escalera said. “So I would say not just find a job you love, but find an environment that will let you be the most successful version of you, and you’ll never feel like you have to work a day in your life.”

Other experts offered their own rewrites of the expression.

“To make the expression accurate, I’d say, ‘Find a job you enjoy and that recognises your efforts, and build time for hobbies and activities that bring purpose outside of work,’” Goehner said. “You are more than your job.”

“I’d tell people if they haven’t found a job they love, to find a job comprised of tasks they like and do what they love on the side,” Kennedy added. “Jobs are often more about the day-to-day than the broader industry or buzzwordy job description, and paying attention to the type of work you find engaging can be a good way to find job satisfaction within the confines of being employed by someone else.”

Whether you’ve monetised a hobby or simply work to pay the bills and seek greater purpose elsewhere, Ng noted that there is no objective right or wrong in your approach to your career, just a difference in personal choices and values.

If you do want to find meaning in work, however, he shared this rewrite: “Find something that brings you joy and purpose every day, and you’ll always have something to look forward to.”

“Ultimately, the idea that you should ‘find a job you love’ is a good one, but it’s not always realistic or feasible,” Pearson echoed. “Instead, it’s important to strive for a job that aligns with your values and provides some level of fulfilment, while also being realistic about the fact that work is still work, even if you love it.”

This story was previously published on an earlier date.

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I Hid My Disability At Work For 6 Years. When I Stopped, My Entire Life Changed.

In 2002, I planned a monthlong solo trip to Australia.

On my second day on the trail, while crossing an ankle-deep stream, I slipped and my body flipped 180 degrees. I hit my head and then rolled off the side of a waterfall. The waterfall was about 3 feet high and I landed in a reservoir pool. A German tourist, who happened to be there, dragged me out of the pool.

After the fall, I sat on the riverbank — stunned, confused and very concussed — while my tour leader climbed down the bank to meet me.

“Do you want medical attention?” the 20-something tour leader asked.

My mind flashed back to the medical insurance I had booked for the trip. “Emergency helicopter evacuation costs an additional $250,000,” it read.

“I’m OK,” I replied quickly.

On the short hike to our base camp, I repeatedly tripped and bumped into things. My clothes were covered in blood and my body had cuts and bruises everywhere. I stayed at camp and skipped the hikes for the remaining two days. When I finally got back into Sydney, I walked into the hotel lobby and a guest looked at me before loudly announcing, “Can someone get this woman medical attention?”

With my cuts, bruises, disoriented demeanour, and the same muddy and torn trail pants, I can only imagine how alarming I looked.

At this point, I was too concussed to evaluate what my medical insurance would or wouldn’t cover. And so I refused medical attention and assured the staff I just needed to rest.

A few days later, I flew back to the States.

As my bruises and cuts healed, I thought the worst of it was over. I saw a doctor in New York who ran some tests.

“Everything looks clear to me. You’ve just had a bad concussion,” he said.

Before the accident, a regular day of my life included a 5 a.m. workout, working my corporate marketing job until 10 p.m., and then attending weekday drinks out with co-workers, friends or clients. Somehow, among all that, I maintained a social life and part-time freelance gigs.

A few months after returning from Australia, my co-workers and I were invited on a yacht trip hosted by Forbes magazine. As the boat left the dock, I knew something wasn’t right. I felt disoriented, unwell, and struggled to hold a conversation. I sat in one spot for the whole trip.

When we got back to the harbour, I held onto the rail as I took careful, unbalanced steps. “Wow Jill, it seems like you didn’t hold back on those cocktails,” a co-worker teased.

I hadn’t drunk at all. One of my colleagues helped me into a cab, and I assumed I was seasick.

A few more months went by and I attended a business lunch where something similar happened. I was looking out the windows of the restaurant watching the curtains float in the breeze and cyclists zoom past. I felt woozy and as if I were underwater. I couldn’t concentrate on what my colleagues were saying. When I tried to go to the bathroom, I struggled to stand up. My body flopped back into the chair like a rag doll.

“I think I need to leave,” I said. Strangely, I returned to the office for the rest of the workday. Somehow, I made it back in one piece.

“I don’t know what’s wrong with me but I’m seriously not right,” I remember thinking. I was scared.

I booked countless doctor appointments. Whenever a specialist realised they didn’t know how to help me, they stopped answering my phone calls. I had no answers. I was determined to figure it out so I started tracking my triggers: constant movement in my line of sight, flickering lights, loud ambulance sirens, the brakes of the New York City subway screeching to a stop, loud baritone voices — and the list went on. In other words, New York City had transformed itself from a bustling wonderland to a total vestibular nightmare.

Even though I was noticing triggers, I still had no explanation for regularly appearing drunk, slurring words, being unable to concentrate and exhausting easily.

Without a diagnosis or even the vocabulary to describe what was happening to me, I felt a tremendous amount of shame and guilt. I must have done something wrong. How could I be so dumb? I also feared what my injury would mean for my job security. It felt like everyone around me associated value only with high levels of productivity. I had reason to believe that my worth was based on my output. Who wants someone with an undiagnosed head injury on their team?

It is estimated that 10% of people in the United States have an invisible or non-apparent disability. I’d like to think that corporate culture has more awareness and training on disabilities than it did in the early 2000s. However, research shows that there’s still a long way to go. According to Harvard Business Review, most people with non-apparent or invisible disabilities choose not to disclose these to their managers for fear of being seen as less capable and having their career progress stalled.

In the years following my injury, my brain’s default was: If they know, I will lose out on opportunities. Eventually they will fire me. And if I lost my job, then the unthinkable would happen: I’d lose my employer-sponsored health insurance.

Outside of rent and food, all my income was going to medical practitioners that weren’t covered by insurance. Some years, I was paying $50,000 in medical bills (half my salary). I resented that I worked just as hard but I didn’t have the same financial freedom my co-workers had. (I was often asked why I didn’t own an apartment yet and the implication was that I must have spent all my money on shoes.) But without a steady income and health insurance, the diagnosis and treatment plan I desperately wanted would never happen.

For six years, I didn’t tell anyone at work, including HR. As the years went on, I occasionally opened up to a boss whom I saw as an “ally.” Most of the time, they didn’t really listen to me (or my admission was viewed as an inconvenience or it was a “private matter” like getting my period).

And so, I stopped speaking up. I tried to manage triggers as best I could to hide my disability. But “sucking it up” was slowly killing me. My symptoms were getting worse and my vestibular attacks were becoming longer and more frequent.

My catalyst to change my circumstances was a horrible appointment with a neurologist.

This doctor informed me that — to prevent continued deterioration — I needed to avoid all forms of transport or I’d eventually be completely bedridden because, after all, he had “seen this before.”

“Enough! You don’t get to tell me how my life is going to play out” was my primary thought. I resolved to figure out a solution for myself, since health care had failed me.

I read every book, web forum and magazine on brain health. Learning about vestibular disorders and accessing the vocabulary to describe my condition was my ultimate breakthrough. I realised it wasn’t all in my head. I learned why certain triggers caused vestibular attacks.

Discovering clinical language empowered me to be able to describe what I was experiencing. It also gave me evidence of triggers to avoid.

At this point, I had advanced to a higher level of leadership in corporate. My role in the company coupled with my deep knowledge of brain injuries meant I was able to advocate for myself.

I was no longer asking for permission to have my accommodations met.

Instead, I would simply ask people if they could stop swaying their bodies so we could finish our conversation. Or I’d ask them to please quit shaking their leg, which vibrated the floor and therefore me. Or to please cease pounding the conference room table when they wanted to make their point. I clearly explained that these actions created vibrations that triggered my vestibular disorder. It was not easy for people to understand or remember.

My entire life changed.

I started setting healthier work boundaries. I unequivocally prioritised my health. When I was working, I was fully present. Eventually, I transitioned into entrepreneurship, because I knew my skill set could be expertly translated to coaching and helping people working in corporate with their career strategy ― and I could maintain higher quality health on my own schedule.

From my own informal research, so many people with disabilities work for themselves because it’s often a more predictable environment than working for an employer.

Looking back, I wonder if my journey would have been different if I had felt comfortable telling people about my disability. Perhaps it would have if there was more awareness and compassion toward people with non-apparent and invisible disabilities. If employer handbooks mentioned non-apparent and invisible disabilities, maybe I would have felt safe speaking up. Or maybe when I did address my disability with leadership, my condition would have been met with compassion rather than criticism.

Instead of living in hiding for six years, perhaps it would have taken me one year to own my disability. Or a few months. Instead of living with shame and guilt, maybe I would have experienced a more inclusive experience.

I often describe my head injury as a gift. Because of it, I am a better leader. I have heightened empathy, I have more compassion, I seek diversity and inclusion in all spaces, and I have a totally positive outlook on life. Anything is possible. But it took me decades to realise this truth.

I truly hope to live in a society that makes this journey easier for anyone else who is born with — or acquires — a non-apparent or invisible disability. This all starts with a culture of support, openness and compassion.

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