196 Pills Per Week
When I got out of college, I was so excited to work. After all, I’d spent the last years devoted to my education, waiting for my chance to be apart of the great American workforce. Like many of my peers, I spent hours researching, writing cover letters, and applying to jobs. Yet, unlike most of them, the thought of how I would reconcile a new job with a chronic illness loomed. It added a new layer to the job search and at times, my illness felt like a disqualifying factor.
Months later, I sat at my desk, IV drugs running through my veins, typing furiously on my computer. I could feel the cold medicine ball pressed up against my bare stomach.
I had to hide my IV inside my shirt so I wasn’t seen as weak or incapable.
My phone rings and it’s time for a team meeting. Shit. My drugs were almost done and I was going to have to unhook the IV in 15 minutes. It wasn’t an option for me to leave the meeting, so I just went and knew that soon my arm would start to ache having not changed out the meds. And boy, did it ache. I sat through the meeting, mind wandering, wondering how people were supposed to work when their treatment was a full-time job on its own.
My days started out with 14 pills, a shot in my stomach, and a 24 oz drink that tastes like dish soap. I would walk to work, sit at my desk, and hook myself up to my first of six drugs. Each compression ball would take an hour to get into my body. I’d work 9-6, try to see friends after, and then go home to do my nightly routine, which consisted of your regular household tasks. Then I’d take another 14 pills, and go to sleep. I did this for six months and managed to still smile, for the most part.
I had no idea how people did this. I couldn’t believe I was one of those people. All I wanted to do was lay in bed. So I quit my first big girl job and got a job at a startup. Granted, at this point, my PICC line had been removed, but I now suddenly had a team around me that understood my disease and allowed me to work from home if I wasn't feeling well. I still remember the first day I worked remotely and my boss called me just to check in and see how I was feeling. I couldn’t believe it. My boss cared about my health enough to call me and check in. It was unbelievable.
There are currently 133 million people in the United States living with a chronic illness.
If you head to Facebook, you can see for yourself, hundreds of people asking the same questions: How do people work full-time with a chronic illness? How can you find remote work opportunities? Are they any companies that are actually understanding of your illness?
Despite living with a chronic illness, I know that I, like the millions of Americans with chronic illness, have the capabilities to become an instrumental part of the workforce, if only we can recognize everyone’s unique abilities and find creative solutions to include them. That’s what drove me to create Chronically Capable, a platform that connects the chronically ill with employers who offer remote work, flexible schedules, and favorable health benefits. The platform is currently in development by a team based in Washington, D.C, with plans to launch a beta version of the platform in 2019. Those interested may sign up to be notified of the launch on our site.
Do I have to disclose my disability to my employer? What accommodations am I entitled to request? Can I be paid less because of my reasonable accommodation? So many questions might arise as you go through the employment process.
There are simply no excuses for not hiring chronically ill workers. Doing so would detrimentally reduce your available talent pool.
Let’s start by getting this straight: you do not have to disclose anything about your health to an employer. If you wish to disclose, you’re allowed to disclose at any point in time, whether that be during the interview, during the negotiation process, once you’ve started, or even three years into your job.
Living with a chronic condition is incredibly time- consuming. Whether it’s frequent doctor appointments, blood draws, treatment schedules, or taking the time to rest, our days are jam-packed to the brim. I know this first hand as I’ve struggled with Lyme disease since 2015.
One of society’s biggest misconceptions is that people living with chronic illness are not able to work. We can — we just have to reimagine what that looks like.
At Chronically Capable, we’re building a platform that does not discriminate - based on race, gender, disability, or even health conditions. Having been in constant contact with employers and job seekers during this time, we recognize how much work there is to be done.
This past week, the internet has been flooded with news surrounding remote work, as employers are flocking to adapt and train their employees to work from home. It’s funny to me that it took a global crisis for businesses to realize that it’s not expensive nor difficult to allow their employees to work remotely.
It was my last summer before my senior year of high school when I had my first episode after a ride at the county fair...