I remember what it felt like to get fired for being sick: that pit in the middle of my belly that caused my mouth to go dry, my voice to shake, and my face to flush with shame. Sitting around a table with multiple bosses, I couldn’t believe what I was hearing. I did a good job, brought value to my clients, and risked my life to work there. They repaid me by “asking me to leave.”
October is National Disability Employment Awareness Month. As I write this, I’m reliving the pain I experienced during that time. Trauma stores emotions deep within our cells. I feel the twinge of heartache and tears welling up with every word remembered. I can feel the panic, embarrassment, and anger all over again. I can feel the shame that clouded my ability to speak up for myself that day.
It felt like my fault somehow, as if I had control when cystic fibrosis took over. Perhaps it’s the layer of residual shame that still lives within me — the shame that my body determines what I can and cannot do. That’s a tough pill to swallow, especially when my mind wants to go farther than my body can carry me most days.
In 2014 I got hit with pneumonia three times in the span of three months. I was hooked to an IV through my sweater at work, pumping my veins full of antibiotics in hopes of being able to breathe again. It was clearly the season for pneumonia, as other co-workers had been hit, too. They told me it took them months to bounce back to normal. Little did anyone know I was already breathing at a deficit: I’d kept my disease secret.
I worked as a school social worker through a nonprofit that specialized in working with individuals with disabilities. The irony is not lost on me: I was fired for bearing the very burden they pledged to support. I came back early from my last hospital stay that season so I could finish out the school year with my students. Still on IVs, I cranked out paperwork and final visits despite my chaotic sleep schedule and pure exhaustion.
The school’s principal informed my supervisor: We don’t give pity interviews. Both of my higher-up bosses stared at me blankly, unable to comprehend why I didn’t meet the attendance policy. Apparently, hospitalizations weren’t excused absences. They “allowed” me to work through the summer because they didn’t have anyone else. Their attitude of “doing me a favor” left me bitter.
This organization reinforced why I chose to hide my disease from employers. Making me feel like I have to hide this part of me that I can’t control screams shame. I didn’t know how to articulate that CF is an unpredictable beast that rears its ugly head without a moment’s notice. Nor did I know how to advocate for myself at the time. I was timid and afraid of standing up to “authority” figures, especially ones who were signing my paychecks. It didn’t help that I felt “less than” able-bodied people because of CF.
If I could turn back time, I would teach them how to speak to individuals with disabilities. I would show them my scars and how proud I am to bear them. I would change their limited perception of people who don’t fit their mold. I would quit the place that broke me before they had the chance to write me off for being sick.
Here’s what I know: Knowledge is power. Wisdom is valuable. Understanding is priceless. Know your rights. Trust your instincts. Channel your inner advocate. I no longer have the luxury of being silent anymore. I cannot stand by while talented individuals who happen to have disabilities are not chosen over the able-bodied. There is a stronger force driving me to speak up for those that won’t for themselves.
Shame is sneaky. It tells you the lie that we will never measure up. Those of us with chronic illness feel like we are already operating at a deficit. Competing with able-bodied individuals makes it so we never feel good enough to qualify.
Although, we don’t have to engage in competition. We can invite others into our secret worlds enough to see how truly valuable we are. I challenge you all to allow your unique gifts to be seen – as we are all an intricate piece of the divine puzzle.
To the able-bodied: I pray you give us the opportunity to prove all your preconceived notions wrong.
To the rest of us: I pray you know your worth, fight for equality, and speak up even if your voice shakes.
It’s our time to shine. Let’s rise up together and show the world what we’re made of: bravery, brilliance, and badassery packaged as “differently abled.”
Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today, or its parent company, BioNews, and are intended to spark discussion about issues pertaining to cystic fibrosis.
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