One aspect of life as an adult that I wish I had been more prepared for as a child growing up, was how to deal with illness. Nowhere in popular culture’s movies, hit TV shows, young adult and children’s books of the time, was there an effective, practical blueprint, available to teach me how to deal with one’s body breaking down. When I looked for representation in the popular TV shows of the moment, all I was faced with was: perfection and health. I didn’t see some young protagonist being limited like I was and effectively blocked from their own dreams like my doctor was telling me I would be, breaking through.
How do you react? How do you face that the narrative taught to you in school, in popular culture, and in the home, about: reaching for your dreams, and becoming whatever you work hard and strive for, no longer applies to you? What is the emotional and psychological work that needs to be done within yourself to not give in to despair, depression, or the feeling that “it isn’t fair!” How does one then reconcile, the way to live a fulfilled life, and re-orient one’s goals to better represent their actual reality? Versus the narrative you grew up believing and being taught, would one day be yours.
I have a few chronic illnesses that begot each other with time and lack of care, and apparently I was born with that propensity. I was not diagnosed until I was in my mid-teens getting ready for university, and extremely, inexplicably sick. Looking back I had lived most of my life in some level of semi-constant pain. But, in my family, my parents and siblings, had looked at these ‘newfangled chronic illnesses’, and ‘social disorder’ symptoms, as plain mental illness. The concept of mental health, self-care and even naturopathy, which are all vital to taking care of my illnesses today, just as much as pharmaceuticals are, were things my parents didn’t believe in. So I was taught at home, to ignore my body, ignore my pain, and to pretend to be living a narrative that wasn’t mine. I was a semi-professional athlete at the time, and illness at that level was seen as a sign of weakness. Mental health disorders were seen as a sign of being mentally ill, aka crazy. Not in my high school, my family, nor my social athletics circle at the time (full of healthy teens), could I find the pathway to dealing with the reality of my difference. Being different than was not, the somewhat ‘socially-trendy’ thing it is now. Although even now, being different feels as if it is only accepted if you fit into certain boxes or categories of difference. For chronic illness, only a few illnesses seem to be socially-viewed as deserving of acceptance, visibility, and an accompanying social narrative. Those are the ones most publicized for fundraising, and made visible in our social fabric via our educational system, media, TV and films. Along with this representation comes the shared acceptable social response; may it come from family, friends or strangers. Which is wonderful. For them.
I wish more of our: primary, secondary, and post-secondary educational system represented all members of our social fabric. Because not providing a path for those that may develop, discover, or become physically or mentally ill, is tantamount to throwing away those members of society. Until they ‘come back to their senses’, or become visible for our popularized narrative again, in the guise of becoming healthy. Or, for a lot of us seeking social visibility and acceptance, it may lead us to reject our illnesses superficially. While pretending to live a life of health that isn’t true (either physically, mentally, or both). I believe that this sense of isolation, of not truly getting to live a life whose narrative is ever represented positively, or in a non-temporary state in popular culture and social discourse, is highly damaging.
I think it tells those people that they are worthless unless they are healthy as non-senior citizens. Unfortunately, this lack of representation can often deprive us, much too soon, of perspectives, social experiences, and a potential community of persons. They’re not being shown their worth, as well as the fact that they are not alone, is a disservice to them, and to our society as a whole. Living a life of lower mobility, of certain mental and/or physical limitations have made them different. It has made them see life differently, in their approach, in their empathy, in what matters to them. That difference, I believe can only add to our human experience, and elevating who we are as a global community.
I wish growing up I would not have had to weather alone the deception of learning that I was sick, and would always be sick. I wish I had had a visible community to turn to for support, while trying to adjust mentally and emotionally, to the many things that I would no longer be able to become or accomplish. Education-wise I wish I could have had standardized services to turn to in high school and university. In order to help me bridge the gap between what my passions were, and what I could realistically do, to still be an active, productive member of our economy. I think for my family, and healthy social circle, the lack of educational, and societal representation for my chronically-ill community, allowed them to feel that their: rejection, disbelief, and flat out disavowal of my experience (despite medical tests to support my story) was acceptable. It felt okay for them to react that way, because society and our educational system, has yet to tell them otherwise.
In this post, I want to reach out to all of my virtual community of young adults, and adults whose life may drastically change. Or, who have been disavowing a part of themselves because it isn’t ‘accepted’ by those around them. I call on you to face yourself, to do the emotional, psychological, or in some case medical research. And see how to live fully with the cards you’ve been dealt. Please find your community virtually and/or locally. As, support in how you experience life and health, is of utmost importance, for your mental and physical wellness. Learn to rewrite a positive narrative for yourself, that is representative of what you can do, and that will allow you to have an authentic space in your community. I promise you, that you are worth the story of self that you have yet to write.
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