“I stared at her in disbelief, realizing the noises that were coming out of my mouth weren’t even words. I stumbled around the letters and sounds, willing for something comprehensible to come out of my mouth, until I managed to very slowly whisper the words ‘I need to leave.’ I wanted to tell her she had no idea of her privilege, that her ableism shined brightly, but I hardly had the energy to stand, never mind fight back. I didn’t know it at the time, but I was suffering from Transverse Myelitis, which is a swelling of the spinal cord.
I was made to feel as though it was my fault for leaving. I was made to feel as though I was lying. I wasn’t and it wasn’t my fault. It was my body’s fault and I had no way to prove it. I knew I wasn’t okay and that I needed to go, but because my boss couldn’t see anything wrong with me, she wouldn’t take my word for it. My body regularly betrays me, and believe me, if I had control over it, I would not let it treat me this way. My illness is not a malicious act. It is not something for you to take personally. It is not something I would ever choose or use to my advantage. All of a sudden, a girl who never ran out of things to say, suddenly did. Anxiety swept over me. My vision was blurred and I was putting a lot of effort into not throwing up directly onto the shop floor. I grabbed my things and left. The response from my boss? Silence.
I could feel her anger, her disappointment and her cynicism without her having to open her mouth. She couldn’t empathize. I was dehumanized to the point where the company’s business was more important than my health. If I had broken my leg on the shop floor I would have been whisked away to the hospital, been told to take some time off and get well soon, but because my illness isn’t visible, they get a choice whether to believe me or not. It is more beneficial for the company to put the blame on me than to admit they are firing me because I’m disabled. Of course, they can’t ‘fire me for being disabled’ so they have to find other reasons to let me go. When they do that, when they pick my performance to pieces and criticize my every move, I then have to deal with being humiliated and adding another layer of my ‘not being good enough’ complex to the myriad of problems I already have to face on a daily basis.
I have fibromyalgia and I’m also currently awaiting a possible Multiple Sclerosis diagnosis (the swelling of the spinal cord is another one of many symptoms that point towards this). Fibromyalgia is a long term chronic condition that causes pain – lots of pain! It also causes extreme fatigue, muscle stiffness and weakness, cognitive issues, and many other health problems. Over the past year, my condition has worsened. It started out with pain. When I say pain, I mean incomprehensible pain. I’ve given birth and would honestly rather go through the pain of labor than the pain I experience on a daily basis. At least after the pain of labor you are blessed with a child and years of joy. There is no joy that comes from chronic, every day pain.
I saw multitudes of doctors and had multiple procedures. I simultaneously gained symptoms and lost faith. To begin with, my place of employment were supportive, but as my condition worsened, their patience lessened. Just to clarify, I loved my job. It allowed me to dress the way I liked, sell products that I both loved and had a passion for, and I gained a close knit group of friends I now have for life. Unfortunately, they weren’t interested in adapting the job role for me. Not once was I asked what they could do for me, instead I gained an X on my back because there were things my disability made difficult for me to do for them.
I was told if things didn’t improve they would have to let me go. That choice of words was a big moment for me. It was a defining moment. It was the moment I realized I was too sick to work. Yes, the way they went about it was wrong, but it is a decision I would probably have had to make for myself at some point in the not so distant future.
The truth is, I had been downplaying how ill I was for a long time. One reason was because I needed to keep my job to be able to feed and clothe my daughter, another was I knew my life would change if I was unable to work. I would lose another part of myself. My favorite part of working was talking to people. I’m a naturally outgoing person and feel happiest in an environment where I get to interact. So, I worked through the pain. I would leave work, pick up my daughter, shut myself in the bathroom and cry. Every single shift, I would get home and cry. I pushed myself until I was physically sick. I pushed myself until I needed my boyfriend to help dress me because I was too tired to lift my arms. I didn’t want to be forced inside these four walls by a society that failed to see my potential because I struggled to stand. The stigma stung.
Though management did me a favor, the way they did it was heartless. We need more compassion for people with disabilities in all aspects of their lives, and that includes in the work place. I believe that we deserve the dignity of being able to earn a living if we choose to. We need adaptable roles and job security; being physically impaired doesn’t diminish our value. We still have plenty to offer, if you will let us.”
This story was submitted to Love What Matters by Becky Edwards. You can follow her on Instagram here. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories.
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