Why I Refuse to Apologize for My Disability Anymore
The other day, a friend of my boyfriend’s caught a ride up to Whistler with us. We spent the four-hour drive getting acquainted and talking about all things active: skiing/snowboarding, marathons and triathlons. She especially had a lot of questions pertaining to fitness competition. So naturally, when we parked at a gas station and I pulled my handicapped placard from the glove box, she chuckled and asked, “Are we cheating?”
“No, it really is legitimate, I promise,” I assured her, in an apologetic tone. But despite giving her a condensed explanation of mitochondrial disease and all of its nuances, I found myself feeling a little self-conscious that she thought I shouldn’t be using the placard.
It occurred to me that I often use that same apologetic tone. For instance, if I need to access my G-tube while in public, I often ask permission so I don’t disturb some of the more squeamish folk who may be in my vicinity. I often excuse myself to the bathroom so people don’t have to see it, which is pretty unhygienic. (You don’t eat in a bathroom stall, right? That’s the equivalent of using my G-tube in the bathroom.) The other day, I apologized for not being able to make a previously planned social engagement and referred to myself as unreliable, even though it was through not fault of my own. I never considered how unfair I was being to myself until a friend recently pointed it out.
Above all, I especially feel contrite for being on disability. I felt embarrassed, as though I had failed society — that having to resort to disability was a reflection of my character rather than my body.
In the wake of my nasty divorce in 2014 and a car accident that June, my illness flared severely on account of the stress. In addition to my normal gastrointestinal difficulties, my neuropathy and dystonia worsened, I developed optic neuritis in my left eye, costochondritis, cognitive difficulties, and had widespread inflammation in my connective tissue. I had difficulty walking and had to use my cane. I also lost dexterity in my fingers, which is a proverbial nail in the coffin for a molecular biologist. I was a mess in every sense of the word, and it came to a point where I would put alcohol into my feeding tube to quell the deep depression, constant pain and general misery that encapsulated my life. I went through three jobs that year because I was too stubborn to admit that full-time work wasn’t realistic. I grew up hearing that SSDI is welfare and that most people on it are “lazy” and abusing the system. Those words reverberated in my head every time I thought about applying. It took becoming homeless to make me realize my reticence was slowly destroying me.
Initially, I didn’t want to tell anybody. What were people going to think? After all, I have a Facebook page dedicated to my life as an athlete. There are photos of me skydiving, swimming, doing gymnastics, snowboarding, etc. Shouldn’t a person who can perform such grueling physical activity be more than capable of holding a full-time job?
I would love nothing more than to work full time. I decided to make the switch from biotech to personal training because I genuinely love helping people feel good and achieve their fitness goals. I still hope the day when I can do so is in the near future. But currently, I am still in the hospital every six weeks on average and, unsurprisingly, many employers frown on their employees having to take a week off every month or two with no warning.
My illness tends to occur in distinct flares. I have plenty of good days. However, I have just as many bad ones. I just don’t talk about them as often as I used to, simply because I refuse to give my illness any more of my life than it already robs me of. Furthermore, even on my good days, I am not asymptomatic. I always have some amount of pain in my joints and my abdomen. I have to vent my stomach through my G-tube at least five times a day or the distention will impede my ability to breathe. It takes me quite a long time in the morning to get moving. Yes, I am an athlete, but few people have any idea how challenging that can be for me. I have to work five times harder than I normally would to achieve the same result. Many people don’t see the moments in my life that aren’t captured in selfie form. The hours spent in a fetal position in the bathroom in the middle of the night. The innumerable nights spent tossing and turning in pain. The crippling fatigue and weakness that sometimes makes the short walk to the bathroom a grueling feat. The inconsolable tears that soak the sheets of my hospital bed while the nurse strokes my hair and assures me I am not dying.
So I am not going to apologize anymore, nor should anyone else who feels compelled to do so by a society that feeds into the “But you don’t look sick” mindset. I know there will always be people out there who feel the need to criticize me based on my posts on Facebook, and they are free to do so. But I am free as well: free to be kinder to myself, free to refrain from having to explain myself when people question me, free to admit that sometimes I need a little extra help or rest — but most of all, I’m free to live my epic life in an unapologetic fashion.
Image via Thinkstock.
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