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How the System Sets You Up to Fail When Living and Working With Chronic Illness

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There is a negative stigma around people who are too sick to work, who stay at home and collect a disability check from the government.

There is also a negative stigma around people who work a full time job, but have to take off work frequently for doctor appointments, treatment days and sick days.

So, how do you win in this broken system?

How does one successfully balance working a full time job, while also balancing a chronic terminal illness, which is a full time job of its own? How do you keep your job and your sanity without overextending yourself? Is it even possible?

I’m still trying to figure that one out.

Being chronically ill is hard enough as it is. The aches, pains and fatigue that come with it, the juggling of medications and doctor schedules and the fights with the insurance companies are all hard enough. The sick world was just not meant for patients who want to do more than sit in a doctor’s office all day.

Doctor’s offices often close at 4pm and on weekends, so you have no choice but to take off of work. Doctors schedule treatments at the last minute or they want you to get different tests done on different days, as if it’s not a big deal to spend your days driving from one appointment to the next. My treatment center doesn’t even have letterhead to write a note on to get me excused from work, because no other patient in my clinic works during active treatment.

The world of full time jobs is not meant for chronically ill people. I work as a teacher, so even taking planned time of off work is a burden because when I do take off, I have to write lesson plans for a substitute and make up the missed work, so my students do not fall behind because of me.

Or how about the fact that I only get 10 days of paid leave a year, and I have already allocated each one to a treatment day or doctor’s appointment? Those days are already taken by my chronic illness, so how will I get time off to see my sister graduate college, or celebrate religious holidays with my family? Will I get written up again, like I did last year when I ended up in the hospital for three weeks or had to fly across the world for my grandfather’s funeral? And this is after the fact that I have already scheduled most of my treatment days to be on days off and school breaks when possible.

Do you know how extremely awful I felt when I got an email from my employer stating our insurance premiums were going up due to “several high cost claims” a year after I came under their insurance? To know I am one of the reasons some of my coworkers cannot afford insurance for their family is truly sickening – no pun intended. To be so frustratingly aware of my burden on my coworkers and students is absolutely disheartening.

What about the fact that my illness is progressive, which means I am going to have to miss more and more days as time goes on, because I am just going to get sicker and sicker? I have big dreams, passions and ambitions; I intend to keep working and teaching until I am no longer able to. And I am afraid that time may be coming sooner than I had hoped. I am not sick enough to stop working yet, but I fear I am too sick to reach the goals I have set for myself.

A good friend once told me, “your job opening will be posted before your obituary.” I know I need to take care of myself before I worry about anything else. But it is frustrating when your illness tries to control your entire life. It is infuriating when the biggest thing that is getting in the way of my success is myself.

Even with the Family and Medical Leave Act (FMLA), this system is not fair to people who are trying their hardest to make a life and a living. How does one successfully break free from the discrimination and stigma of being chronically ill, despite their best efforts of contributing to society? Some days it seems as if there is just no winning in this system. I wish there was an answer or a simple fix, but there isn’t. Just know I will not give up without a fight; I will continue to advocate for myself and what I need, because my life is worth it.

Getty image by biscotto87

Originally published: October 28, 2019
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