I’ve grown tired of hiding who I am

Posted August 30, 2022

My name is Polina and my journey is pretty typical of many zebras.

I started classical ballet at the age of 5 and continued well into my teens, I was often singled out and celebrated for my flexibility. Puberty was a painful process, my joints were on fire, especially my hips and knees. I was a clumsy kid and would twist my ankles constantly but I never stopped stretching myself to the limit and beyond. In my late teens and well into my twenties I took on contortion as a pastime hobby, a practice I both admire and have grown to resent due to the toll it took on my body in retrospect.In my mid, to late 20’s I began falling. Falling while walking on the street, falling while dismounting from my bicycle, falling down the stairs. I saw many doctors, physiotherapists, and specialists and no one could figure it out. I am young and otherwise mobile with an active lifestyle. I got into rock climbing but found that my friends progressed very fast and I could hardly keep up. I self-diagnosed myself after extensive research (thanks google) and with the help of my GP was able to complete an initial assessment and get on the EDS clinic waitlist. After years of uncertainty, I receive my official Hypermobile EDS and POTS diagnosis at the start of the Pandemic in 2020 through The GoodHope EDS clinic in Toronto.While the diagnosis is validating I continue to encounter an onslaught of issues. As a photographer and filmmaker, I am always on my feet. My stamina is on the decline as is my mobility. This year I came out of my EDS closet and began to use a cane on an on-need basis in public. This shift was more painful mentally than physically (because canes are awesome!). Throughout my life, I have worked extensively with folks with varying abilities and conditions throughout my life and career but I struggled to extend this compassion to myself after my diagnosis.

My career, or should I say my vocation, is physically demanding and I feared that it would impact how people perceive my ability to function on set and would deter people from hiring me due to my steep drop in endurance once I reach my threshold. The threshold signifies the shift between a normal body and one with a visible mobility impairment and after spending several years doing my very best to hide it, the cane outs me. I know this is an unhealthy mindset fuelled by internalized ableism and layers of denial. If they can’t see it, maybe I won’t really have to face it. But time catches up with you, especially with a progressive condition.

To fear the backlash of society’s reaction to my ability is to continue to harbor shame and hold on to the belief that there is no room in my industry or community for people with varying abilities or that my mobility might hinder my quality of work. I have dedicated my life to my creative practice and my mobility aids are there to support me along the way.I live with an invisible disability that will become more visible with time. I can walk uphill but resent the thought of going downhill, both physically and metaphorically. I don’t know what dreams and hopes I will have to compromise on and which I will continue to pursue with determination but I have been blessed to have found my vocation through photography and film. My practice will adapt and grow as will I. I will fall and get up, time and time again. I hope to learn to ask for help and continue to offer it when I am able to. I will continue to advocate for access, and compassion and fight for equitable resources and support from our governments, health providers, and the general public.At the end of the day, I have just grown tired of hiding who I am. I am grateful to have supportive friends, an incredibly supportive mother, and a partner who is always there for me through the highs and lows of life. All I have to remember is that while EDS has shaped my life, it is not the whole picture. The whole picture is how I choose to frame what I see.You can see my work at www.polinateif.com

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