The Conversation I Need to Have With the People Who Judge My Illness

To the woman who pushed me out of my seat, to the man who ridiculed me for parking in a handicap space, to the anonymous person who left a note on my windshield, and to all the people that judge me and others based on appearance:

Did anyone ever teach you the saying “Don’t judge a book by its cover?” Would you push someone out of their chair if you saw they had a cast on their leg, using crutches, or walked with a cane? Would you reprimand someone for parking in a disabled spot when you saw them struggling with a limp, or using a wheelchair to get from one place to another? Would you passive aggressively leave notes for a visibly disabled person to find in order to make them feel unworthy of their rights?

It is already difficult enough to live with a chronic illness, and then to have people doubt the legitimacy of my disease only adds to the unspoken pressure I feel to disguise my illness so I can be treated equally and with respect. As I continue to conceal my illness, partially because the symptoms are sometimes invisible, and partially because I hate facing encounters like the ones I’ve mentioned, I know I am dismissing an important dialogue; a conversation I feel obliged to bring attention to, as it not only affects me, but millions of people around the world who struggle with unmerited scrutiny.

When you look at me, you probably assume the ordinary. But let me tell you that my life has been far from “normal.” 

What you don’t see is the required medication I take every three hours simply to be able to chew, swallow, smile, walk, speak and breathe. What you don’t see are the days I can barely pull myself out of bed, missing out on the precious time I have on this earth to fulfill my dreams. What you don’t see is the lonely, internal crusade within my heart and mind this illness has forced me to fight. What you don’t see is the shame, guilt and humiliation I have experienced because of ignorance and insensitivity. What you don’t see are the tears I have cried over the last 10 years, pondering all the “whys.”

What you don’t see is the mental and physical strength I have worked tirelessly for, gained and rightfully earned because I had and still have the will to live a fulfilling life.   

I’ll say this. It is easy to have preconceived notions of what defines disability. It is easy to misjudge someone because of how our society portrays the meaning of being disabled.You may have thought you were doing a just thing; however, appraising a situation or someone based solely on what you think is taking place, is in my opinion, intolerant and small-minded.

I’m not asking for pity; in fact, that is the last thing I am asking for. Do not feel sorry for me because of what I have been through. My life is not a sob story, and this letter is not intended to prove my disability to you, because I owe you nothing. 

You may find this narrative contradictory, maybe even hypocritical. Yes, in a sense, I am critically scrutinizing your actions, evaluating your conduct as less than satisfactory. However, my illness was not a choice… your actions were.   

I have the option to let this illness defeat me; to surrender to its potential. But I don’t. So I am not going to let my disease or an ill-informed person stop me from living or stop me from dreaming.  I have been told many times that my ambitions have been too big for the life I was given. Who are you, or anyone for that matter, to judge the capacity of my aspirations?   

I choose to get up every morning, go out into the world, earn an education, have a social life, make a career, etc. And I do this all in spite of my illness… I will never allow my illness to dictate my life, or allow someone to determine the way I handle my disease and live my life.  I have always believed it is better to use my disease as a source of strength rather than a source of sorrow, and what better way to own my disease than by not letting it interfere with the accomplishments of my dreams and desires?

There are three principles I try to abide by in my life, and that is faith, charity and hope. To believe in something that is bigger than my human self, to help others by working from a place of compassion, and to always maintain confidence in myself to succeed. 

I invite you to adopt these values into your own life. Because while my physical limitations have shoved me into situations I thought I would never be in, I have never felt freer in knowing that the potential to fulfill my dreams are endless, and no illness or person can stop me from trying.