I worry about my health every day. It’s a foreign concept to me to not be constantly caring for your body. Although I fight it, I have a close relationship with my body because of my illness that other people might not be able to understand or relate to. Being aware of your mortality on a daily basis is scary. Sometimes I think about all of the ways I have to take care of myself in a day. I need to take pills before eating, I have to eat before taking other pills. I have a cane in my house and in my car, just in case the ability to walk leaves me. I need regular blood work to make sure my A1C and glucose are normal and that my hormones are staying in check. All of this happens to me on a regular basis. So when I see this widespread disregard and fundamental lack of compassion and empathy spread through so many people who I thought I knew, I become frustrated. The lack of drive or inability to keep caring about the health of others because it’s become too tiring, is frustrating. I want to understand. Having the weight of the world on you is tiring. There is a lot of responsibility on all of us right now, and I understand that that has become exhausting. But as someone who is forced to get beyond that fatigue every day, isn’t this an obviously worthy cause? Coming from my perspective, it is hard for me to see past others current actions as anything other than apathy. This apathy could stem from a deeper cultural issue that has been present in the west long before this. It has just been exacerbated by a pandemic. I now worry about my health and my partners health more than I ever have before. Why don’t others feel that we are worthy of being kept safe?
So much of my identity is wrapped up in my health. I will concede that a lot of that has been taught to me. We are told by society and by medicine that so much of our health is contingent on our choices, and consequently when we are unhealthy it is our fault. We are guilty of some kind of crime when we aren’t healthy, that the moral choice and goal is to constantly be striving for “health.” I don’t even know what that means anymore. Before I was chronically ill, I still was obsessed with my health. I was paranoid that any pain I was feeling meant I was dying. I had an intuition that there was a deeper problem because the constant unrelated health problems I was always having to overcome. Yet, I was facing this without an advocate as an adolescent, which meant these fears were easily dismissed by a long line of professionals and most fervently by my own family. It was strangely vindicating to be correct all these years later, but in the end all I feel is sadness for my past self. Much of my core beliefs and my truest self were shaped by my experiences with illness and the struggle towards health. Now my diagnoses have long names, like Polycystic Ovarian Syndrome and Endometriosis and Myofascial muscle pain. I now know that for myself and so many others, health was never a choice. There is no alternative other than illness and the disability that will keep flooding me with each passing year. I think this is what has given me a healthy awareness of my own mortality, as well as a strong tolerance to isolation.
Many people with chronic disease and disability feel isolated throughout much of their life. This is due to many of the literal and societal boundaries kept around public spaces that exclude them, both purposely and unintentionally. Isolation from daily activities isn’t a new experience of this year, regardless of the pandemic. I’ve seen a lot of language along the lines of “life is passing me by” during the pandemic from a lot of able bodied people. That the reason so many people are letting go of social distancing and the habits we’ve all adopted right now, when disease is at an all-time high, is because of isolation fatigue. When I’m asked to have sympathy for those who are choosing ignorance of reality, I can’t help but think those are the same people who choose ignorance of my own reality, long before 2020. We don’t all exist in the same public and societal space. They have no consciousness over the fact that so many have been living in this same kind of isolation for their entire lives and that their fatigue has been punished by the world we live in and been labeled as “laziness.” Able bodied people’s idea of life passing them by or wasting their youth is my everyday experience of life. Hearing about how dissatisfying they find my life and how vocal some have been about how disgusting this kind of isolation is, to be completely honest, triggering. It’s triggering because it reminds me that so much of the population, whether intentionally or not, finds no value in my life. It reminds me that I am truly invisible and reinforces the archaic idea that the world would be a better place without having to work around those like me.
While I can’t emphasize enough how insulting it is for my way of life to be talked about like it’s some sort of punishment, that is only half of the point. The lack of empathy I’m seeing in those around me isn’t solely a personal choice. Apathy is fostered by a broken system of governing. By not giving people breathing room during a global crisis, by not providing financial support and health care with no strings attached, you create an environment where people are stretched thin, forced to break isolation because they have no other choice. Forcing generations to fend for themselves under the guise of a free and fair market doesn’t exactly foster a sense of community with your fellow man. That fundamentally flawed way of life and way of thinking is crumbling under the pressure of this year and the cracks are shockingly clear. It has only fostered violence of many kinds, whether it be through direct acts or through neglect. I think it’s misguided to not place some of the blame on the larger system, while also encouraging the individual to please, look outside of yourself. Disease, isolation, and grief for a life unlived has always been my reality. All I can ask is to find the strength within yourself to live through it, because that’s what I’ve had to do every day of my life, and my life has value regardless.