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.
NDEAM celebrates both the past and present contributions of workers with disabilities in America. Importantly, NDEAM serves as a mechanism through which supportive and inclusive employment practices and policies for all workers, especially those who have a disability(s) can be showcased, advocated for, and encouraged.
Growing up with an invisible disability has taught me that there are some people who are ignorant, unaware they are exhibiting audist behaviors. It’s because the hearing person has never met a deaf person before and will try to walk away because they don’t know how to interact with them. People who don’t feel comfortable have a tendency to get away from something so they don’t have to deal with it. That can be frustrating for deaf people.
Empathy is something that I believe is truly lacking in today’s society. “It’s gotten harder to empathize; that’s why it’s so important we work at it. Luckily, we can.” says Jamil Zaki in this UC Berkley article, 'In a Divided World, We Need to Choose Empathy'. The article discusses the hard truths surrounding empathy, supported by real-life examples and proven facts about how it can help us all.
I will never forget November 19th, 2019. My new rheumatologist broke the news this way: “I bet you have been told your entire life that your weight was the cause of your back pain. I want you to know it wasn’t, although weight loss can certainly help. We see the damage, and you were right - you have Ankylosing Spondylitis.”
As the weather heats up and we feel the urge to travel, I want to share some tips that have helped me keep my anxiety at bay while away from home. Many mental health illnesses flare up when we are away from home because we are naturally out of our comfort zone.
Existing as a disabled woman in the workplace, we face any number of barriers to getting our jobs done but none more painful and avoidable than the ignorance of our peers.
I knew I was an actor before I knew I was Autistic. I started acting at 11 years old, but I wasn’t diagnosed until I was 22.
There are many misconceptions about the lives of those of us who live with CP. I hope to help someone who may be living, loving, or just learning about Cerebral Palsy.
While many of us know the benefits of closed captions, many Zoom users still have not enabled closed captions. While this used to only be offer to 'paid' Zoom accounts, the company announced earlier this year that closed captions would be available to all Zoom users, regardless of plan type.