Remote Work Finally Let Me Focus on My Job, Not My Invisible Disability

I’d always wanted to work in an office. Growing up, I envisioned a life for myself that had me running off to sophisticated work events, typing away on a Blackberry (because it was the ’90s and those were the hot new thing), and hardly needing an apartment because I’d basically live at the office. No matter the cost, I wanted to be a “career woman.” Except here I am, barely in my 30s, having realized the only way I can truly focus on my job is to stay far away from the offices I’d once imagined.

In my early 20s, I was waitressing while finishing a degree in preparation for my future high-powered job as a creative advertising executive when I started to have pain in my back. I chalked it up to the woes of being a waitress—that many hours carrying trays piled with champagne and hors d’oeuvres, it was no wonder!—until I was finally in so much pain, I had to see a doctor. He diagnosed me with degenerative disc disease, which basically means “my back really hurts all the time and will just keep getting worse.” The degeneration had already caused several herniations, some of which were pressing on nerves.

The pain became so acute that I could barely sleep, and I started to struggle with depression and anxiety. I quit my waitressing job (which I loved), and I moved to a warmer climate to finish my MFA, because I read about a theory that warm weather helps joint pain and I was willing to give it a try. But somehow, even though my daily life was severely affected by pain, the image of what my work life would look like once I finished school remained pristine. I figured I’d be able to compartmentalize enough to put on my power suit and find the success I’d always dreamed of.

My first office job came with quite a reality check. Sitting through a brutal commute in LA traffic (which I think makes everyone’s backs hurt, honestly) and then for long hours in an office chair, plus the general stress of my job, made my back stiff and my muscles tighter. I struggled to successfully manage my pain, and my work was suffering because of my disability. I wasn’t able to focus, so I wasn’t meeting deadlines, and I missed a lot of days because of pain and doctor’s appointments. I felt like I was constantly playing catch up.

Me and a lot of other people, it turns out. One in four U.S. adults have a disability and chronic pain affects about 20% of our population, accounting for up to $80 billion dollars a year in lost wages. Those lost wages don’t surprise me, considering how difficult it is to do even the most basic tasks when you’re constantly hurting.

It’s hard to explain chronic pain, and it differs for everyone, but for me my bad days feel dizzying, like I can’t think or focus on anything other than the fact that I’m hurting. It’s like someone has a bullhorn pressed right up close against my ear, shouting that my body hurts (on an endless loop reminiscent of “The Song That Never Ends”), and no matter how hard I’m trying to get something done, that’s all I can hear or think about.

The commute-and-office routine—and the pain that accompanied it—became so unbearable, I thought I was going to have to quit and find a more passive source of income. But then the pandemic hit. And like so many organizations across the country, my company—which had previously expected us to show up on-site every day—sent everyone home. Suddenly, I found, I could actually focus on doing my job.

One of the first things I realized was that the fact that my disability is unseen—and 96% of Americans living with chronic medical conditions have illnesses that are “invisible” or “hidden”—was affecting me almost more than the pain itself.

I “look” fine—and that made me feel extremely self-conscious. I felt guilty about taking time off for pain or doctor’s appointments, or saying no to staying late when I really didn’t have the physical stamina and knew I needed to get home and rest, take pain medication, or practice some self-care. I often suspected that people thought I was making it up or exaggerating. It certainly didn’t help that I had a few coworkers who actively and vocally doubted me. One time when I took a day off for an epidural, a coworker made a snarky comment in Slack about “people taking time off for a sore back” when we were swamped. If she only knew!

Even on low-pain days, I can only sit for about 20 minutes at a time, and then I can only stand for about 10 minutes before I need to sit again, so I spend a lot of my time switching between an office chair and a kneeling chair. In a shared space, this was understandably distracting. One coworker suggested I try ADHD medication to “learn to sit still.”

I also had a traffic cop at my office parking structure who constantly yelled at me and even wrote me a ticket for my “fake” handicapped parking decal. I didn’t have to pay it, obviously, but that didn’t make it less humiliating. For some reason, we only tend to believe people, particularly women, when we can see their disability. Feeling like I needed to constantly prove that I was in pain only added to my exhaustion.

And of course, once people get it, they’ve generally been kind. But let’s be real—while most HR departments are willing to accommodate your disability needs, that offer usually extends to giving you a standing desk, or maybe an ergonomic chair. But if you try to set up an ice bath in the middle of the break room or drop into a frog pose mid-meeting, people might take issue, no matter how understanding they think they are.

Working from home has given me more privacy and flexibility. I have the freedom to do whatever I need to do, quickly and alone, so that I can continue to focus on my work. I don’t necessarily need to tell anyone when I’ll be at an appointment, or if I need to go lay on the floor for a while, because I can still work from my phone.

It also means that I can move at my own pace—which is often a little bit slower—without feeling like I’m being watched or graded on my performance in the role of “efficient employee who speeds through to-do list with a smile and a bounce in their step.” All that matters is that I get my work done. I don’t have to be “on” for eight hours straight trying to act as pleasant as possible and not disrupt anyone else’s day.

While I’m a pretty jovial person by nature, pain can make anyone cranky and anti-social. On high pain days, I can socialize in small doses. I can sign out of Zoom (or turn off my camera) and stop pasting a smile on my face and pretending I’m perfectly fine without worrying that I’m creating a negative work environment.

If I need to cry, or scream, or call my mom to help me soldier on through my pain, I can (minus the side eye I’d get if I attempted any of these things in the office). I have the freedom to just exist, however that looks for me on a given day, and focus on doing my job rather than trying to explain how my back feels or justifying my productivity. I don’t need to give anyone else access to my pain levels. I just do what I need to do to take care of myself. This means my productivity has actually increased, and I’ve gotten more and higher-quality work done since working from home, even though I haven’t had my boss looking over my shoulder every day.

I still believe myself to be a career woman, it just looks a little different than I imagined. Right now, I’m fortunate that my current company has no immediate plans to return to an office setting, but especially as COVID restrictions are lifted, there’s an underlying anxiety that I might be asked to go back at any moment. My hope is that employers will let me and so many others hold onto the relief we’ve found in remote work even after the pandemic subsides. If not, I’ll just have to send the blueprints for my break-room-ice-bath to HR—or send my resume off to new opportunities where that won’t be necessary.