I couldn’t imagine being denied long-term disability status. The pandemic began shortly after my migraines did, and though it had removed one barrier from my returning to work—my commute—there were many days when I didn’t feel well enough to get dressed, not to mention sit in front of a laptop for eight hours to solve complicated coding problems.

But when I filled out the paperwork for the insurance company’s review, I began to doubt myself. The forms asked a bunch of questions that didn’t seem to apply to me. Did I use a mobility aid, struggle to communicate, or need help with cooking? Could I use my hands, sit or stand for a long time, or climb stairs? I thought about the days when I was too dizzy to walk in a straight line, too depressed to hang out with my friends, or too tired to eat anything but leftovers. But I wasn’t sure if these examples were good enough. After all, I could still walk, speak, and feed myself. Then there were my better days. When my pain was lower, life was easier, relatively speaking. Though I was still in some pain, I could go for a walk or spend some time on my laptop. This is what makes migraine a dynamic illness—symptoms fluctuate over time. Were my answers supposed to reflect my best days, worst days, or somewhere in between? The forms didn’t say.

After the insurance company finished their review, my case manager called me to inform me of the result: denied. By an entire board of neurologists, she said. Neurologists who, I later realized, were employed by the insurance company to evaluate claims. “Migraines aren’t usually considered a disability,” she told me.

What I didn’t know at the time of that fateful phone call was that migraine disease is the second leading cause of disability worldwide and the leading cause of it among women under 50. Its impact is so often downplayed because, like many chronic illnesses, it can be difficult for our medical system to properly diagnose and treat what Meghan O’Rourke calls an “invisible illness” in her book The Invisible Kingdom. Invisible illnesses are routinely under-recognized, under-researched, and poorly suited to the many “official” definitions of disability.

The forms I filled out tracked with the current gold standard: the US CDC taxonomy, derived from the 2010 Affordable Care Act’s disability data collection specification. It lists six ways in which a person can be disabled: mobility, hearing, vision, cognition, self-care, and independent living. These six categories are meant to be broad enough to encompass a variety of conditions, and they are a huge step forward from 150 years ago when, in the eyes of the US government, the only disabled people were those diagnosed as “insane,” “feeble-minded,” “deaf,” “dumb,” or “blind.” But where in this current system is a disease like migraine supposed to fit? Where was I supposed to fit? It was no wonder that, according to the insurance company, I didn’t.

I knew that my symptoms made it impossible to work full-time, but I also believed what my case manager told me: I wasn’t disabled. Had I been less sick, I might have noticed the obvious mismatch between what I was going through and what the insurance company told me I was experiencing. But when something as confusing as chronic pain happens to you and your functioning is impaired, it’s all too easy to believe what you’re told. There aren’t many certainties offered, not many questions answered about what to expect or do, and your world is filled with people whose confidence eclipses your own. Many doctors told me, for example, that they had what it took to get to the bottom of my condition, once and for all, if I only paid for another test or treatment. I, desperate for relief, often believed them.

Four months into the pandemic and two days before the dreaded one-year mark of my short-term disability claim, I stepped off an elevator onto the 28th floor of Facebook’s downtown San Francisco high-rise to the sight of dead office plants and deserted islands of bright-white desks. The kitchen shelves were empty, too, though still labeled with the names of all the free snacks—Ghirardelli chocolates, Sour Patch Kids, Pocky, Trident. Thanks to the pandemic, the last day of my software engineering career would go unnoticed. I told no one, not even my manager, that the insurance company had forced me to quit. I feared that he would agree with them and think I was a liar. After all, they had a lot of doctors on their side.

I didn’t know it at the time, but there had been at least one other option for me to explore at this moment: returning to work with accommodations, or modifications, to my role and schedule. No one mentioned this possibility to me, and I didn’t know to ask about it. It would have been nice to have this one choice presented to me before I walked away from my six-figure tech salary.

But another thing I wasn’t told was that I could challenge the insurance company’s decision by filing an appeal. This is obvious in hindsight, but at the time, it was anything but. By stopping work at 27 years old, I’d unwittingly joined a minority group: young disabled people. Chronic illness is on the rise and affects 60 percent of US adults under 35, but according to the Social Security Administration, only 1 in every 250 young adults becomes disabled each year. There was no road map for me, few peers in my social circles who shared my experience, and no fairy godmother to tell me what to do next.

In hindsight, what could have helped me most here was a union. The role unions play in the disability process varies, but unions were created for the very purpose of preventing situations like mine, in which workers aren’t being properly educated about their rights or advocated for. When an employee becomes disabled, it’s common for unions to participate in negotiating accommodations, interface with disability insurance providers, and push for independent medical assessments. Disabled workers who are part of a union also earn more than their nonunion counterparts.

I consider myself very fortunate that, nearly a year after my disability payments were repealed, a friend of a friend introduced me to a lawyer who was willing to go toe-to-toe with my insurance company. Her approach: drown them in documentation. She interviewed my husband and all of my closest friends, compiled every word of every note my doctors had written, threw in a few research studies and my headache logs, then topped it all off with a report from a “vocational expert”—someone whose job was to describe, in detail, why I couldn’t still do my job. The appeal was over 400 pages long.

I didn’t read most of it. At the time it was filed, I was on the brink of a major relapse, cycling in and out of the ER and in severe 24/7 pain, another indication that I was more disabled than I was told. But I couldn’t help but wonder about the statements made by my friends, so I decided to skim that section.

“She can be utterly incapacitated,” one of them said.

“Natalie is very motivated to work. I believe if she were medically able to work, she would absolutely still be working,” said another.

And: “Her health completely knocked her out…. her disability has been long-term and destructive.”

Up until that point, I thought I wasn’t allowed to claim the disability identity for myself. That’s why I’d trusted my disability insurance company to determine whether or not I was disabled, and why I for so long hadn’t argued with their verdict. But reading my friends’ comments felt oddly resonant, like recognizing myself in a mirror. The disability insurer’s opinion mattered a whole lot, financially speaking. But from then on, I refused to let any doctor, case manager, or lawyer determine who I was.

Three years after first getting sick, I started identifying as disabled, both to myself and to others. Not long after that, my lawyer won the appeal. The disability insurance company agreed to pay me a portion of my old salary every month. Overnight, two years’ worth of missed payments appeared in my checking account (less than the lawyer fees, alas).

I’m thankful that I got my disability payments back and, more important, found my voice as a disabled person in the process. Even as a tech employee in what many would consider a “dream job,” I was ill-equipped to deal with the financial complexities of disability. What, then, of the millions of Americans with fewer resources than I had? With chronic illness on the rise across all age groups in the US, disability insurers—including the federal government’s Social Security Disability Insurance, or SSDI—will be looking for ways to cut costs, and there’s no higher cost to a disability insurer than a young disabled person who may need financial support for the rest of their life. Though it’s hard to imagine, navigating the system could become even more difficult than it is today. Stories like mine could become all too common. Unless, that is, we take seriously America’s need for greater patient advocacy, both in the workplace and outside of it.