I don’t talk about this often, because as it is with many disabled or sick people, it’s not what you want to be defined by. Your disability is you and, it’s also not. You feel less than, but you also don’t. And in many ways you feel more capable of taking on challenges because every day presents a new challenge that you overcome. My “disability” is something most people can’t see and I am resistant and to even call it such because compared to those Americans who truly cannot work, I am lucky.
I have full mental capabilities, both arms, legs, the use of all of my senses, and am in many respects a very healthy person, who simply happens to be very sick. My body is a walking contradiction. I do, however, have an auto-immune disease that I will have for the rest of my life. And as a Type 1 brittle diabetic, there are infinite complications that anyone looking at me is unable to see.
I am, I should point out, still capable of gainful employment. The Social Security Administration considers “gainful” $1,040 a month for a disabled individual and $1,740 a month for a blind individual. According a report from the U.S. Bureau of Labor Statistics released June 21, 2016, in 2015 17.5 percent of persons with a disability were employed. 32 percent of workers with a disability were employed part time (compared to 18 percent of those without a disability.) Persons with a disability are less likely to work in management, professional, and related occupations than those without a disability.
I know I am lucky to be employed full-time in professional position.
However, it is a complication that roars during moments when I need it to be silent. It’s a disease that has landed me in the ICU three times over the last year. And it’s something that, at times, makes working feel impossible and makes me feel like a failure.
Your disease doesn't care how hard you hustle. It doesn't care if you have a deadline or a flight to catch.
"Your disease doesn't care how hard you hustle. It doesn't care if you have a deadline or a flight to catch."
Case in point: I was packed, ready, and supposed to be in Texas for work on a Monday earlier this year. My flight left at 8am. At 5am that morning, I was rushed to the ER and admitted to the ICU for four days. Unable to talk, my mom had to call my boss and let her know I wouldn’t be on the flight. I remember even in that moment, screaming in pain and gasping for air, thinking, I can’t miss my flight. I have to be in Texas. I have to get there somehow. I had only been at my job about a month and I was devastated. I was frustrated. There is the logical part of a person who knows they are useless if dead. There is the other side of me that hates feeling useless when alive even more.
All I wanted was to get to work. I had no option but wait. And the reality of working while sick is that sometimes waiting is all you can do.
But that doesn’t mean it’s easy. And it certainly doesn’t mean that I don’t cry or get frustrated or fear that one day, it might cost me my job.
There are days when my blood sugar is so high that I find it impossible to get work done. Days when my blood sugar is low that I sit at my desk and shake and sweat for twenty minutes. Sometimes this happens in the middle of an important conference call. Sometimes it happens when I’m up against a deadline.
There are always going to be parts of my job that don’t align with a health plan. Stress raises your blood sugar. Not eating consistent meals makes it go crazy. And as much as I try to manage stress or stay consistent, there are days where I’m up against the clock, or have a million and one things to do, and I’m stressed. My blood sugar spikes. I’ll feel confused, less capable, and disoriented.
There are moments when you’re afraid you’ll lose your job because of the number of doctor’s appointments you have, or the unexpected trips to the ER that take you out for four whole days. You feel guilty that you get more allowances than your co-workers. You try to make up for it by making sure you don't miss deadlines, that you power through the pain, and show up for your team. But you cannot forget to show up for yourself.
What I’ve learned is that taking care of my health is number one. I’ve also learned that no matter how regimented I keep it, there are going to be off days. It is during those moments that being patient with myself is more important that soldering through.
As an employee the best thing I can do is my best. On most days that is more than enough. On my worst day, it might not be. But I've come to learn that I don't need to justify my job.
I've earned it based on merit and hard work-- something no sickness or disability can take away.
More from our blog: