chronic illness and workplace reality

One of the hardest parts in accepting I had endometriosis was giving up my big fancy career dreams. 

As a child, I thought I’d grow up to be an important leader someday. I pictured myself running a busy publishing firm or traveling the world to report on global issues; I imagined my phone always buzzing, working long hours and enjoying every minute of it, eyes glued to my laptop as I typed up another piece or edited another manuscript. I was smart, I was resourceful, I was goal-oriented. I was top of my class. I wanted to make an impact. People told me I was going places. I thought my career would be my life’s passion.

By the time I reached college, I knew deep down this was a pipe dream—because chronic illness doesn’t care what your dreams are. It stops for nothing. The older I got, the more I became anxious about having a big stressful career path. Missing a few classes every month wasn’t enough to expel me from university, but I wondered how that would go over in an office setting, where my responsibilities would be greater. There was no way I could avoid missing a few days of work each month because of my endometriosis pain, which usually leaves me in bed for hours on end. I worried that my future employers wouldn’t believe me, and even if they did, wouldn’t understand. Endo is an invisible illness, often with periods of recovery and subsequent flares. It doesn’t wait for deadlines or meetings or the demands of business. What if I couldn’t come into the office? What if I needed to take off work unexpectedly? Who would want to hire me? 

So after I graduated, I looked for lower stress jobs, ones with flexible hours or work-from-home options. They were fewer even five years ago, so I found myself working part-time gigs and freelancing, to protect myself from the demands of standard working environments and the potential consequences. I didn’t want to let my employers down or be fired or jeopardize my health. The system is designed for able-bodied people, not people with chronic diseases; in order to survive, it requires you to work full-time hours, usually in an office, and be tied to other people’s timelines and requests. I knew I couldn’t continue freelancing forever if I wanted to bring in a livable wage but I never imagined I’d find an employer who would be okay with my setup. Thankfully, I found a happy medium where I am now. I don’t have a passion for what I do and I don’t expect I’ll do it forever, but I can (somewhat) afford to live, and my employer is understanding and flexible. I still dream of finding a career that will let me make use of my passions and abilities without sacrificing my wellbeing, but I know now I’ll never be some high-powered executive—and I’m more than happy about that.

For so long, my worth was tied to how valuable I was for the system. How my intelligence could be utilized for the gains of the system, how productive I could be, how much success I could generate. I wrapped myself up in this identity in the form of public perfectionism: never show weakness, always be agreeable, be the best, act like I have it all together, don’t complain, and most importantly, never mention my pain. I pretended everything was fine for years, and I honestly can’t believe I was able to hide it so well—most people in my life had no idea I struggled with this until recently. But that wasn’t my reality. My body and mind don’t always allow me to have it all together; I can’t always be at my best. 

For the most part, the people in society who make it to “the top” are able-bodied. People who struggle with health issues are rarely given the opportunity to be leaders, because being a leader in this system requires total devotion of time and effort, no setbacks, which just isn’t possible for people who don’t feel well all the time. Bodies with chronic illness are considered out of control because they are not predictable, and therefore are deemed less productive—which is the ultimate marker of value in a capitalist society. This leads to those with disabilities or illnesses or anything “unhealthy” being marked as lesser, of lesser value, lesser use. If they can’t use you, you are meaningless. So we internalize this mentality and believe we must strive to be productive in all aspects of life in order to gain value and worthiness in society. But the catch is, the system is wrong. Humans are inherently worthy and conceptually unique. Our worth is not tied to a monetary figure or work ethic. So I had to figure out—who am I, without those career titles and capabilities? Am I still valuable? Am I wasting my talents and intellect? Can I lead a successful life if I don’t have a fancy career? 

Most days, I’m relieved it worked out this way, that I didn’t become a workaholic, that I found a sense of identity outside of a career. I think I would have found this awareness anyway; would have discovered that career success is not the end-all be-all of life, that what matters in the end is simply how well I cared for and connected with others. But having endometriosis gave my brain and body that extra push to recognize how deeply ingrained capitalism was in my identity—how I let it take over the entire drive of my life and how intricately it became wrapped up in my purpose. My purpose has nothing to do with how much money I generate, what kind of job title I have, or anything like that. I hope someday society will see that as truth for all humans, regardless of disability or illness. 

Kristyn LeeComment