Why I quit my job

Having muscular dystrophy means that everything works differently for me. Not in a negative sense necessarily, just different. Most of the world isn’t really designed for disabled people, so we have to get creative. Sometimes that means putting in 5x the effort than an abled person might have to in the same scenario. That’s how going to work felt for me. And that’s why I quit my job.

After job hunting for nearly two years, I honestly couldn’t explain to you the feeling of relief that washed over me when I heard that someone wanted to hire me. Like, I almost didn’t even believe it. It took weeks for it to fully sink in. And as stoked as I was to finally have a job and an office to go to every morning, it wasn’t as easy as I imagined a part time data entry position being.

Having muscular dystrophy means that everything works differently for me. Not in a negative sense necessarily, just different. I have to constantly find new ways to make situations work, how to adapt, find clever ways to make an inaccessible experience accessible for me. Most of the world isn’t really designed for disabled people, so we have to get creative. Sometimes that means putting in 5x the effort that an abled person might have to in the same scenario. That’s how going to work felt for me. And that’s why I quit my job.

The mornings were hard on my entire family.

My mom had to wake up at 6:30 so I could be on time for my 9 am shift. She’d have to rush around to get all three of us ready. I’ve written about what mornings are like for me, and it’s hectic to say the least. I know it might not sound like a big deal, but something important to remember is how little my mom is able to sleep. She wakes up several times in the night to roll my brother and I in our beds since we’re unable to move independently while laying down. My brother and I don’t usually sleep well either, partly because of that reason. But basically mornings have always been rough for us, and trying to get to work on time only made it even harder.

Even though my office was technically accessible, it still wasn’t accessible.

Not all of the way, anyway. None of the doors had a button to open them. Not the two main doors at the entrance, none of the conference rooms, or the break room. None. If I needed to go anywhere behind a closed door, even just inside the building – I needed to have someone with me. Which, to be fair, there usually was. But there were also times when I was stranded.

And there were times (aka every day) when I opted out of things like going on a walk outside on my break or to the food truck to get lunch. Because I didn’t want to have someone stop what they were working on to escort me around the building when I didn’t need to. I already had to ask someone twice a day to help me at the beginning and end of my shifts. The thought of doing that any more than absolutely necessary felt horrible to me.

Since I was on my own, I could never go to the bathroom. Which meant I never drank and rarely snacked. And that meant I got sick… a lot. Migraines from dehydration. Dehydration setting off my weird metabolic disorder which I’ve had since I was little but doctors were never able to diagnose. Basically, I dehydrate much faster than the average person should. Once I get too dehydrated, my entire system gets thrown out of whack and it’s pretty hard for me to sort of “reset”. To prevent that, I need to eat fairly often and drink throughout the day. But well… you see the problem I was running into.

Having muscular dystrophy means that everything works differently for me. Not in a negative sense necessarily, just different. Most of the world isn’t really designed for disabled people, so we have to get creative. Sometimes that means putting in 5x the effort than an abled person might have to in the same scenario. That’s how going to work felt for me. And that’s why I quit my job.
[IMG: small section of my old desk. You can see the bottom of the computer monitors. In front of them there’s a framed photo of my cat, Penny, a small hand sanitizer, a squishy baymax tsumtsum, and a small green dinosaur planter with a fake succulent coming out of its back.]

Just making it through my shift became anxiety inducing.

I was constantly panicked about who I’d be able to ask for help, who’d be around, what would I say. Little things that seem insignificant to others were huge to me. Chairs in the way, items moved out of reach on my desk, working from a loaner wheelchair. I don’t think most people fully understand just how difficult it’s been to use a wheelchair that I don’t fit in full time since October. Being in pain is nothing new for me, but it was never a constant thing or anywhere as bad as it has been since my wheelchair died. Muscle cramps, sore hips, achey back. All things I was familiar with, but at least they came and went throughout the day.

Now, they’re just a given. They don’t go away. And that’s fine, it’s nothing that’s too much for me to handle or function with. But it does make work way harder. At the office, I couldn’t have my mom adjust me in my chair. I couldn’t stop to take a break for a few hours to rest. After a 5 hour shift, which let’s be honest shouldn’t be too hard, I was fully exhausted. All I wanted to do when I got home was binge tv or sleep.

Plus, there were a lot of times when I couldn’t get through those five hours. I’d have to call my mom to get me. Apologize profusely to my managers. Try to hide just how ashamed I felt for asking if I could bail out early. It got to the point where I would dread getting up in the morning because I knew I was going to get to my desk at work and sit with my panic until I was able to clock out.

The point of this post isn’t to knock my old job or tell people disabled people shouldn’t work.

My office was filled with kind people who always helped me the second I asked with no hesitation. I promise, I know how negative this post sounds, but that’s genuinely not the kind of message I’m going for. Honestly, I have nothing but positive feelings towards the company or job itself. I was always able to take time off when sick or leave early and make up my time later. My manager was the first person who gave me a chance and hired me after talking to me for 10 minutes. All of my team leads were supportive when I announced that I had a new opportunity and was leaving. There were plenty of things I would’ve liked to change about my time there, but the people were wonderful to me.

Another point I want to make abundantly clear: my poor experience is absolutely not a sign that disabled people can’t or shouldn’t work. I’m just one person, and this happened to not be the right fit for me. There are tons of people who would have totally thrived and loved my job. But at the same time, it’s a perfect example of why it’s important to listen to, and more importantly, believe disabled people when they tell you something doesn’t work for them.

I know that a part time data entry job where the only thing required of me is sitting at a desk for 5 hours sounds perfect and totally reasonable for me. But it wasn’t working for me. Both my mental and physical health took a huge hit. There are a lot of disabled people who are forced into situations that cause their health to suffer as well, because so many people don’t understand that people should have the right not to work. But that’s a whole topic for another day.

To end things on a positive note: I got another job!

I’m so grateful that I was able to have a new job lined up before I quit my other one. I’ve been working in my new position for about a week now, and it’s going great. The best part? I’m working from home! Being able to get up, set my own hours, and have everything set up exactly how I need it has made a massive impact on my life. It’s all so new, but already I’m feeling wildly better about where I’m at. I did have to take a pay cut, but the benefits of working from home definitely outweigh the money issue. I’m thankful that my family is in a place where I was able to take a pay cut without worrying whether or not I’d be able to pay my bills.

Things are looking up, and I can’t wait to see where I’m at in a few months!



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