Disability as a Political Identity: Chronic Illness on Social Media.

life on earth really is hard enough as
it is everybody has to deal at some point with loss of a loved one everyone has to deal with suffering definitely everyone will have to deal with illness at some point in their lives when you are young you're told that when you have an illness that you'll get better or sometimes you'll have the experience of learning about a family member who is sick and won't get better and is going to die sometimes this can happen suddenly seemingly out of nowhere when i was four years old i had to learn that one day my grandpa was here the next day he was gone what do we tell kids at that age when they're four years old in the culture that i grew up in in the christian household that i grew up in what we told kids is you'll see your grandpa again in heaven now as i got older i learned that this was not only something that adults told children but it's something that adults tell themselves people still live with these narratives people really want to form a narrative out of the suffering out of the pain that they experience out of the loss and heartbreak that they feel i don't know if this is totally natural to human nature but it's something that we're introduced to so early in life that it becomes second nature to us that we want to make a narrative out of something difficult that happens in one's life now it's a decision will you make the narrative more exciting will you make the narrative more evocative make your audience feel something by adding something to the story that isn't totally true will you add something to the story to make it more meaningful and emotional for yourself it's not only the narrative that we tell somebody else it's the narrative that we tell ourselves every day about our suffering about our illness about our experience with disease with illness i know from personal experiences i know from family members that living with a chronic illness can be extremely debilitating and unlike when you're a child when you learn when you have an illness either you get better and you're healthy again or you continue getting worse and you die when you're a child it's difficult to understand that there is a kind of middle path where you're still sick you don't get better but you're not so sick that you're dying it's this middle road that a lot of people are every day experiencing now when i was 23 i was learning about a plant-based diet i learned about veganism this was at the time very inspiring to me because all of these diseases that i thought were incurable chronic all these diseases that i thought were inheritable and genetic they could be so much improved by a vegan diet it seemed to be that this is the cure this is the cure for what's ailing all of american society at least obesity diabetes heart disease cancers why wouldn't you do it and not only were plant-based doctors promising cures to heart disease cancers they were also promising cures to other conditions which on the surface you wouldn't expect there are chronic conditions chronic ailments things that people are told at some point by doctors that no this isn't something that is going to get better it's something that you can manage the pain the difficulty every day it's something that you will learn to live with plant-based doctors were saying no this is something that you can cure with a plant-based diet now i've had to learn and come to another crushing realization that this isn't true and there are some diseases many conditions that a plant-based diet won't cure there is no panacea there is no one thing that is going to make the disease go away sometimes what do you do what do you do when your your life is this middle path it's not that you are going to get better it's not that you are going to have perfect health and it's not that you're so sick that you're going to die in a matter of years you are going to have to live your life with this permanent condition this chronic ailment that makes your life worse every day there's a lot wrapped in it into this it's it's really difficult i think it's natural for people to look around at their peers they're looking at other family members looking at others and saying why me why is this happening to me the number one thing that we want to hear is that there's some purpose behind it there's some meaning and if there's not we want to make it for ourself we want to make there be a narrative that we can live by this is our story right this is what it means to have an illness and to get through it to manage it when i was younger i can remember feeling multiple different ways about it when people would say that when somebody experienced an illness or when somebody died in a tragic accident that this is all part of god's plan this is all trying to teach us something there's a lesson to be learned and god works in mysterious ways i can remember at various times feeling comforted by this and thinking you know what yeah these things might seem random but there's some plan there's some big plan you know that's trying to teach you something i've had to reflect that that's really screwed up you know if it is the case that god is the father and he's taking care of all his children what kind of messed up father is this that wants you to suffer that wants you to go through all this pain and torment and that it sets up a sick idea of what an authority figure is somebody that puts you through some suffering and pain to teach you something that's that's the ordeal that you go through in life and it's and it's part of somebody's plan it's part of this omnipotent omniscient all-knowing power that this is what their plan is when i started thinking about this you know when family members were sick with chronic conditions i thought why is god doing this what did i do to deserve this what did my relative do to deserve this when i've dealt with chronic illness myself i've thought am i being punished for something you know like what did i do wrong there's a good amount of resentment and anger that can come up from this and if there's one positive thing that i can think of that comes from illness that comes from disease is that it gets people to question these things and ultimately question the narratives that are told to them now all the time we're picking up narratives not only from our parents not only from our family members and friends we're picking them up from the movies we watch from the television shows that we consume these little phrases that we we hear we glom onto right it's all part of god's plan or there's something to this this is your story right you're gonna get through this adversity this is part of your struggle part of your understanding of life is getting through this and learning that even though it seems impossible at times even though when you're given a diagnosis you might think this is something i don't want to live with i think that's one of the first thoughts that people come through like why why am i going to have to live with this i don't want to live with this we have to learn over time that life keeps going every day you have to keep trying and find the motivation and ambition to live a life that's worth living even though it seems that the conditions that you have been given are just so terrible you don't want to live with them so we're picking up all these bits and pieces of narratives that we've heard people telling us anything to soften the blow anything to make it less terrible than what we really know that it is and it's rare to find somebody who's willing to actually be honest with you and not be an [ __ ] about it you know somebody who's really genuinely trying to tell you in a caring way like no this is not for some higher purpose this is random it's not your fault that you have this chronic disease and there might be nothing in it there might be meaningless suffering that happens but the point of your life is not to get lost in the meaningless suffering to lament your suffering constantly it's to find the will the courage to keep going and find meaning and purpose in your life regardless and what i've seen in people's lives is that they make narratives out of their suffering either it's themselves that have a chronic condition and then they become that condition they take this on as their identity or they have a child who is born with some condition and that becomes their identity i'm a parent of some child with cystic fibrosis you know that is that is who i am that is what i do every day it's natural that's part of your life and it might feel like the most important part of your life but it's important to actually come up with something for yourself come up with a meaning to your life that isn't dictated by these random outside forces something that brings to your life a sense of reason and rationality rather than defining your life based on these irrational circumstances that you're born into or that you happen to fall into for no at no fault of your own it can be really difficult if not impossible to be detached about one's own suffering or the suffering of a loved one but this is very important for realizing the choice that you have in life to be detached enough to understand how you're presenting yourself are you presenting yourself as a victim of the circumstances that you have are you presenting yourself as somebody who has this condition and that's what your life story is going to be or is it going to be somewhere in your identity is it going to be that yes in my past i was diagnosed with this disease every day i live with it but this isn't who i am i'm not a disease and i'm not going to be this person that defines their life off of their disease and it's hard to form your own identity it's hard to find what drives you what's going to motivate you every day to try to make the world a better place when a chronic condition is added into the mix it almost becomes easy for people to form their own identity because they make their illness their identity illness can be so overwhelming dealing with one's own illness or dealing with a family member's illness can take up so much time in your life that it becomes your identity this becomes who you are rather than who you were before a person with drive and ambition and one's own purpose and intent in life the disease the diagnosis that you're given becomes your intent becomes your purpose more and more everybody can choose how they present themselves online it seems to be an easy choice when somebody has a condition when somebody has a disease when somebody has something that happens to them that's out of their control but takes over their life every single day this becomes their form of activism increasing awareness of this disease becomes their motivation in life becomes their purpose in life rather than being beholden to your illness to promoting your illness as a cause isn't it better to embrace the kind of choice that you have in life the optionality of how you present yourself not only with people in real life but especially these days with how you present yourself on the internet and what kind of causes you devote your time to are you going to make your condition your diagnosis your illness your identity are you going to become an activist for this identity isn't it better to make your life about the drive and ambition you have outside of your illness rather than to make your life about that illness