What It’s Like Working in an Office When You Have Tourette’s Syndrome

And how working from home set me free.

I don’t always like to talk about my Tourette’s these days. It’s much milder than it used to be, and I guess I feel guilty. I never want to take space away from others who have more of a story to tell. I’m trying to remind myself, though, that mild as it may be now, it’s part of who I am, which means it’s my story, too.

The whole “9 to 5” type experience has always been hard for me. In school, I struggled immensely. My Tourette’s first came onto the scene when I was in third grade, and a teacher called my mom and told her that I was doing strange things with my body and the other kids were going to think I was weird, so could she please get me to stop. I hadn’t been diagnosed yet, so my mom didn’t have an explanation to present to the teacher. So instead, she asked me about it.

“Catie, why are you doing that with your body?”

“Because it feels good, mommy!”

“Well, do you think you can wait until after school or when you’re alone to feel good?”

“But … I don’t know when I’m going to need to feel good.”

And that was that. My mom told the teacher I couldn’t stop, and she wasn’t apologetic about it. My mom was never afraid of her kids being different. I’ll always love her for that.

The thing is, I think that experience (and probably others) stuck with me because whenever I could, I would try and suppress my tics. When they were really bad, I couldn’t do it, but it was a little easier when they were milder. It’s always uncomfortable, though. It’s like trying to hold in a sneeze or not scratching an itch. Your body just feels off until you finally give in to that urge. That’s what it’s like to try and hold in a tic — and yet, I did it anyway.

Instead of ticing in the classroom, I would ask to go to the bathroom so I could take a walk and try and regulate my body again. After a while, I started getting in trouble for asking to go to the bathroom too much. Sitting in a classroom all day, trying to appear “normal,” was so incredibly hard on my body. When I got home from school, I would collapse. I would sit in my room, unable to do anything at all, including homework. The suppression just took such a huge toll.

My first experience working all day in an office was for internships, and honestly, they felt pretty much the same as school. By then, I was a young adult who was a little more comfortable with my identity, but suppressing my tics had become a reflex by that point. I would sit at my desk all day and find as many excuses as possible to get up and take walks.

I need to pee. Up I go. Back again. I need something from over there. Up I go. Oh wait, just kidding, I didn’t need anything after all. Back again. Lunch break. Up I go. Back again. I need to pee again. Up I go. Back again. Oh, are there snacks in the kitchen? Up I go. Wait, I can’t eat any of these because I’m gluten-free, I forgot. Silly me. Back again.

Constantly getting up from my desk probably made me look weird, but I guess my logic was that it was just an internship. It was a place I was gaining experience at, not a place I was trying to get hired at full time. Eventually, I’d leave, and it would be fine.

Until I got hired for my very first big girl job — in an office, of course.

When I landed my first real job and was hired as a writer for an up-and-coming publication, I was beyond thrilled. Being a writer in New York City has always been my dream. I couldn’t believe it was happening so quickly. A part of me couldn’t believe it was happening at all. Finally, after everything I’d been through, all of the obstacles I’d had to overcome with my disability and beyond, I was where I wanted to be. It felt incredible.

I moved into New York City and began commuting from Washington Heights to SoHo every day. It was a very crowded subway ride to sit in an office for 8 hours with a bunch of people I barely knew to then take another very crowded subway ride back home. It was a lot, but it was my dream, so at first, I was just grateful to be living it.

Working in an office every day was interesting. There were some perks: new people, office dogs, fun snacks. The office itself was cute enough and got plenty of light. We had tables made up of desks pushed together in different sections in a very open floor plan. Everyone in the company could see everyone else. It was a communal workspace, which meant I was pretty much never alone unless I went to the bathroom, a reoccurring theme in my life. Before I’d started applying for jobs, I hadn’t ever really thought about office life or what it would mean for my Tourette’s. Like with every other obstacle, I just figured I’d deal with it. What other choice did I have?

As the weeks turned into months, though, my body struggled more and more. This new life of mine offered very little alone time, and unlike with the internships, there was no end in sight. This was it; this was the thing I’d been working towards. I had a great writing job that I loved so much, and any next step I took would probably also involve working in an office. I had arrived — and it wasn’t working.

Having to be “on” all the time was torture. My body had trained itself not to tic in public, but I was always in public, and not ticing for that long didn’t work. I tried to take breaks when I could. I tried not to be bothered when my tics came out anyway. I tried to cope with the fact that my body was uncomfortable pretty much all of the time. I tried not to think about the fact that this just wasn’t sustainable.

Of course, I recognize that others have a harder time. I can hide my tics, which means I have privilege. I don’t take that for granted. But, at the same time, why do I have to? I trained my body to be this way because of experiences that made little, vulnerable me think she had to. I learned as a kid that my body as it was wasn’t ok. That’s so hard. I was living my dream but struggling immensely because of a part of who I am.

My Tourette’s and I felt like we were being watched all the time, and I desperately wished there was a way I could do my job and feel at peace in my own body at the same time.

And then, I started working from home.

I ended up leaving New York after I slipped into a deep depression. That city life wasn’t working for me. I asked the CEO of my company if I could leave New York but still work for the company remotely, and much to my delight, she said yes. I’m still grateful for that every day. I started working from home in January 2016 and have been doing it ever since. I didn’t leave New York specifically because office life wasn’t working for me — but honestly, it’s ended up being one of the biggest blessings of my life.

Working from home, my body is free. I can let it do what it naturally wants to do without feeling like I’m being watched all day. I can take as many breaks as I need to if sitting still gets to be too hard. I can work in any position, in any room, under any circumstances I want. I knew office life was hard for me, but I don’t think I realized exactly how hard it was until I didn’t have to do it anymore. Working from home felt like the most natural thing in the world, and as soon as I started doing it, I knew I could never go back to an office again. It just doesn’t work for me and Tourette’s.

And honestly, I suspect that it just doesn’t work for many other people, too.

In light of the pandemic, it’s looking like remote work is becoming the norm. Covid brought tough changes to our world, but that’s one I’m grateful for. If I want to switch jobs in the future, saying I want to be remote won’t be such an out-there request. We’ve proven it can work.

I have other disabilities besides Tourette’s. I’m not your standard-issue worker bee. But, then again, who is these days? I need accommodations. I need to be able to work in my own way. I’m a wonderful person with a unique mind. I have a lot to offer. I can’t do it from an office. I do my best work when I’m at my best. When I’m in an office, I can’t get there.

Figuring out what you need is a lifelong journey. I know I need to make adjustments for my Tourette’s. I don’t always know exactly what those adjustments will be until I’ve done the legwork. Working in an office with Tourette’s Syndrome is hard. Working from home truly changed my life.

Editor’s Note: This Medium Writers Challenge entry was added to Index on November 05, 2021.