Photo by Bogomil Mihaylov [Image Description: a photo of typewriter keys]

I am the CEO of a small tech startup. I’m chronically ill, and only few of my employees, clients, and even friends know how sick I am.

A few weeks ago, I briefly entertained the idea of going in a different direction with my career and took a call from a recruiter. I explained my background, what I was interested in and my requirements, including the fact that I need to work from home on a regular basis. “You can’t say that,” he explained to me. “You can’t bring up working from home until you’re at least three or four months in.”

This is the reason why, as a disabled person, I feel I must work for myself.

I didn’t always work for myself. When I was starting out, I worked in another similarly demanding industry. Some of my conditions are episodic — letting me feel mostly normal for long spans before leveling me for months — and I was in generally better health then.

Still, I needed some accommodations. Getting up early has always been a challenge as I have extensive nerve pain in the morning. I often struggled to be at my desk at nine o’clock on the dot. My boss repeatedly chastised me about my tardiness. “What will clients think?” seemed to be her major objection.

After being reprimanded several times, I tried to quietly explain my condition to my boss. I tried to explain my nerve pain, about how some mornings I literally could not will my legs to move, about how a few years before I was in the hospital learning to walk again. I tried, but could tell she was having none of it. “Just get to your desk on time,” her face seemed to say.

It wasn’t long after that I decided to start my own company. I found and hired individuals who were like me: young, hungry, fast learners, who could work quickly and wanted to have some influence on changing a tiny part of the world — even if it was just online and in our vertical.

For a few months, I tried replicating the traditional tech company atmosphere, renting an office space and going in to the office every day. My team of developers and designers was largely distributed around the world and I soon realized that I didn’t need to follow tradition. I could do it my way. I could run a company from my home, at my pace.

Ten year later, we are still a small company and are still mostly distributed around the world. You probably haven’t heard of us, but it’s somewhat likely that you’ve seen or used technology we developed.

At home, I feel empowered and in control of my schedule. Some days, I still can’t get out of bed, but I can (almost) always grab my laptop and hustle. I can still review product requirements. I can still keep up with my team. I can still take calls with my clients. And I CAN do this all from bed if I need to. As the person in charge of this business, I can also be in charge of my life.

Because I’ve always been stubborn and passionate, being my own boss has let me have the career I want on my terms, but it hasn’t been a walk in the park. The biggest challenge isn’t necessarily the fatigue or having to squeeze in client calls from my car between doctors or appointments. The biggest challenge is how few people I can tell without jeopardizing my career and my company.

Even the most well intentioned people don’t seem to know how to deal with my health. When I tell them about my condition, they either treat me differently, like I am something less-than, or they try to pretend I never brought it up. Some are less well intentioned — treating disability as a sign of weakness and choosing not to accommodate me.

In many ways, I feel similarly about my career as I did about school when I first got sick. I was in college, and when I left the hospital in a wheelchair, terrified of a relapse, I refused to tell others about my condition. I refused to sign up for disabled student services. I refused to allow my condition, or worse yet, someone else’s sense of my condition, stop me. I wanted then, as now, to fly under the radar and just get shit done.

As part of my recovery, I am in several online support groups with people who have the same illnesses. The people I’ve met in these groups are some of the strongest and most passionate people I’ve ever known. In their medical lives, they face incredible hardship with dignity, grace and strength. But many of them do not, or feel they cannot, work. In their professional lives they sometimes feel unworthy, helpless and weak. These relationships have inspired me to share my story in the hopes that someone reads this and thinks, “Maybe I can start my own business on my own terms, too.”

Unfortunately, it still seems to me that the the working world is not quite ready or willing to truly open the door for us, despite the advances in inclusion that I hear about. But I believe in this community. I believe that the strength and determination that lets us persevere each day gives us the kinds of superpowers that entrepreneurs need. By starting a business on my own terms and having dialogues like these, I’m hoping to play a part in creating that future.

Anonymous

Read Next: Conquering My Soul Crushing Schedule


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Tech Disability Project

Stories by people who work in tech and experience illness, injury or disability — whether temporary or chronic, visible or invisible.

Tech Disability Project

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Stories by people who work in tech and have experienced illness, injury or disability — whether temporary or chronic, visible or invisible.

Tech Disability Project

Stories by people who work in tech and experience illness, injury or disability — whether temporary or chronic, visible or invisible.

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