By Sophie O’Reilly
I was in second grade when doctors told my parents that my quality of life would never improve. Upon reflection, I guess that 2008 and 2009 as a whole were action-packed years for my family and my health. I spent three weeks undergoing testing at a hospital in Colorado. PBS flew out to Tulsa to document my family’s experience with being unable to access life-saving treatments. During the H1N1 outbreak, we were told that if I contracted the disease, I would die. You can only imagine the chaos that ensued when I was diagnosed.
I was 18 years old when I had the epiphany that my medical experiences were nowhere near universally relatable. I was chatting with a group of friends about the sensation of an IV flush:
“You know that feeling where your whole mouth tastes like salt and your blood feels like shaved ice?”
They did not, in fact, know that feeling.
Given that this realization only came within the last year, it came as the biggest shock of my life that people were not willing to do the bare minimum necessary to protect their health and well-being in the face of a worldwide pandemic. It wasn’t necessarily a shock, though, that they weren’t willing to protect mine. Early in the outbreak, I would often wake up in the middle of the night and spend hours awake. I would wonder what it must be like to have never worried about dying in an operation room, or not being able to afford care, or not being able to live a “normal,” healthy life. I’ll admit that even now, months into the pandemic, I haven’t reached a conclusion. Part of me thinks that I wouldn’t want to know the answer even if I could.
Try as I might, I can’t seem to escape the bombardment of social media posts of friends visiting with others, maskless. I’m sure you know them, too, so I won’t waste time expressing my frustration about that. The self-perceived sense of immortality that those around me exhibit can only be because of one thing: they’ve never had to make a sacrifice for their health. While I’ve never made a sacrifice as significant as what the pandemic has required of me, I am well-acquainted with health-related discipline.
Before pursuing any further, I want to make one thing abundantly clear: as with any population, disabled and chronically ill people are not a monolith. We are a vast spectrum of varying and compounding conditions and non-medical experiences that make up who we are. You, too, might belong to a community with tons of variation. That’s normal. No one person’s lived experiences are more worth discussing during these turbulent times. I am here to give you a glimpse into the world of just one pocket of the COVID-19 experience and one that I feel is often overlooked.
My mental and physical health are utterly inseparable; as my physical health deteriorates, my mental health follows suit. I have horrible night terrors, my OCD is through the roof, and I get unbelievable migraines from stress. It feels like the moment I patch out one fire, another one appears. This has always been true with my medical history: I’ll be diagnosed with some rare condition, they won’t be able to treat it, we try to beat down the symptoms a bit. All I can do is try and stomp out the flare-ups as they appear, but this time, unlike any other period of my life, I feel like I’m doing it alone.
You might have never had to prioritize your health above all else before, and that’s okay! I wouldn’t want you to have the conditions I have. That being said, I’m sure you can find a nugget of my experience with which to empathize. Maybe it’s the frustration you feel when seeing others break social distancing protocol or the headaches from school. Maybe you have a condition, too. That’s because there is room in the pandemic for common ground in what would otherwise be entirely different lived experiences.
Remember that phase of quarantine where the CDC said that 94% of individuals who died as a result of COVID-19 also had underlying conditions? In reaction, I saw a wave of people take this as their COVID-is-over signal. “See? Only sick people are dying! I’m not sick, so I should be fine.” A couple of things worth noting:
- Those people still had COVID-19. Their cause of death was not their condition; it was COVID-19.
- Right. Sick people are dying. Given the amount of public resistance to creating a universal healthcare system that would help serve those individuals, I feel like the absolute bare minimum we could do is wear a mask and try to protect them.
It’s particularly important, now more than ever, for able-bodied, healthy people to reflect on their privileges and attempt to advocate for at-risk, vulnerable populations. When I say this, know that I don’t necessarily mean write a letter to your state representatives (while that certainly wouldn’t hurt). It can be as simple as checking in on a friend you know has a chronic condition or participating in meaningful discourse. No one expects you to have the “right” answer about issues about the disabled and chronically ill community; we certainly don’t have those answers either. We do, however, expect you to wear a mask, vote, and not forget about us.
This article was featured in the Issues Issue. Check out the Issues Issue in its full glory here.