Preface: The idea of writing this article came to me in the fall of 2019. I was feeling very isolated and struggling to connect with people due to my own shift in health. Struggling financially was the common theme in my life’s story, as was the inability to receive appropriate care due to lack of resources. I wanted to interview people in and around my circle, who could relate and freely share their perspectives and feelings regarding the joke of healthcare in America, the emotional truth of isolation that immunocompromised people typically feel, and the required decision to turn to online platforms to fund medical bills. The evolution of the current state brings upon a further examination. Below is a three-part piece in which I will try my best to cover all of the recurring and current issues we face, along with those we will face in the future.
PART ONE: Isolation
My first experience in this world was leaving my mother’s body, and then immediately being connected to a ventilator. My lungs were failing, and they didn’t know if I would make it. On the outside I appeared to be healthy, but that didn’t matter. The fact was that I couldn’t get any air into my lungs. The first month or so of my life was supported by a sea of tubes, which I eventually overcame. Still, my inability to breathe properly never left me or was “magically healed.” I continued to experience a multitude of developing issues, such as intense asthma, severe sinusitis, pseudomonas, polyps/growths around my brain, allergies, lethargy, stomach issues (caused by antibiotic and steroid overload to combat previous issues listed), cystic ovarian pain, more strange growths, blackouts, occasional numbness… I think I will stop there. As I endured these issues, I was frequently subjected to careless doctors and inadequate healthcare.
My formative years were spent in doctors’ offices and hospitals, thanks to a misdiagnosed and mistreated bacterial-infection-turned-growth around my brain. As a child, I understood it to be true that children lived or “belonged” in hospitals. Life was about being ill, but I didn’t really understand what that meant, let alone what was happening to me or why. I have distinct memories of crying out of fear and confusion in hospital beds. “Normal” socialization looked like sharing toys with other sick and crying children. I adapted by “smiling through the pain,” as I have continued to do subconsciously into and throughout adult life.
Luckily, I had the privilege of a mother who dedicated everything to fighting for me to receive care. A child can’t advocate for themselves. Without her determination, I may have not survived. Of course, that didn’t happen without her experiencing countless instances of bias, sexism, and condescension from doctors all over the South. “Crying mother worried about her child” is frequently boiled down to dismissive labels such as “unstable,” “crazy,” “dramatic/overreacting,” or even (get this), “Munchausen syndrome.” While dismissal and gaslighting regarding your personal health issues is one thing, it’s another to have your childs’ ignored.
Fast forward — an empathetic, credible doctor was found and the unidentifiable thing growing close to my brain was removed. I was on my way living my life to the best of my ability. If doctors had taken my mother seriously a year earlier, I wouldn’t have endured the long, painful, scary, and life-threatening process. I proceeded to try to act and feel as a normal child would.
I did well academically, but not always socially. The feeling of isolation has always followed me. I was always reserved, and often attempted to repress and hide my pain to seem normal to my classmates and make them more comfortable (something I have done my whole life). My life had become a constant state of adjustment, searching for the definition of “feeling” and “being normal.” The truth was, I was obviously different. Children either distanced themselves or simply bullied me for my inability to keep up physically or socially. I resorted to books and music for company, but my health issues persisted. I missed quite a lot of school because of allergies, asthma, headaches, pain, the occasional and unexplainable random black outs, and frequent surgeries. Puberty gifted more pain, causing me to miss even more school. In high school, I began playing in bands and using substances to cope. Name a more iconic duo, I’ll wait. It helped me suppress my (physical and emotional) pain that seemed to inconvenience others. I drifted to older crowds because they appeared to understand my silence when I wasn’t making noise. Music seemed like an even ground, and I didn’t have to talk about the struggles I silently faced with my health. Until I did.
Three years ago, I joined another band. We toured almost full-time, and it was great. I was truly pursuing my passion. About a year in, however, my health problems started knocking at my door more frequently, and they became difficult to suppress any longer. My typical, holistically-adopted, insurance-less methods of treatment were no longer working. I was still experiencing pain, “black outs,” trouble breathing, and fear. I had difficulty expressing all this to my bandmates, four non-immunocompromised men. Needless to say, they couldn’t understand.
Countless days were spent in the back of the van with headphones, hiding my tears and pain for the benefit of others. I didn’t want to be a victim or a burden, I kept telling myself. Besides, according to everyone else, “The show must go on,” no matter how big the polyp growing on your vocal cord is, no matter how faint you become, or how much pain you’re in. Out of intensifying worry and no sign of things “going away on their own”, I purchased insurance after a year. My symptoms were quickly progressing. Let me just say: as an adult, it’s been an even wilder ride (it would take another article to describe accurately and articulately). I’ve had to learn how to advocate for myself and deal with doubtful (and let’s be honest, sexist) doctors and peers alike.
If you suffer from any form of chronic illness, you know how isolating it can be. No one who’s under thirty will easily relate to you. Some of the most repeated remarks I’ve received have been along the familiar lines that all of us with chronic illness have heard: “you don’t look sick” or “you just need to believe in yourself!” These remarks make the pain worse in more ways than one. People take it upon themselves to question the legitimacy of your health, as if they have somehow stepped inside of your body and tried walking around. Even if they could, having the choice to step into someone else’s pain still doesn’t give you an accurate picture.
Atlanta artist Io Kurvical knows the feeling all too well. They are currently living with “Fibromyalgia, Celiac Disease, Chondromalacia Patellae, Polyarthritis, Polycystic Ovarian Syndrome, and a large handful more.”
Io says, “There’s a heavy weight on this idea that if people can’t see it, it doesn’t exist. And if it exists and you still aren’t getting better, then you must not be trying hard enough. Because of this, I’ve had to learn how to minimally speak about my illnesses for others rather than truthfully from my experiences. Not only is it easier for people to comprehend something they think they can relate to, but it helps to eliminate their judgement and pity that comes along with my opening up on almost any level about it.”
Because of this lack of understanding that Io describes, many of us with chronic illnesses struggle to be seen or heard. “Oftentimes,” Io adds, “I find more comfort in not speaking about my illnesses at all with others, because the task alone becomes exhausting and daunting, and can lead to intense feelings of loneliness and stress.” If you experience any health issues, you know the difficulty of waking up, the stagnant lethargy that never quite seems to ease, and how everything physical you do takes much more energy than it does for most people.
Atlanta artist and musician Danielle Brutto put it best: “Every day, given the day, you have a certain number of spoons. It could be folding laundry. That’s three spoons. Exercise is four spoons. Making a meal is two spoons. Now I don’t have any spoons left.” Danielle went on to say, “Many people associate their body with fun and freedom and I don’t think I’ve had that.” Most of us with chronic anything haven’t. It’s a right that our own body removes from us.
“Before deciding to leave the house,” Io says, “I have to factor in things like, ‘Will there be chairs? Will there be something I can lean on? Will I have someone around that will understand?’ If you don’t see me around the city as often, it’s because a few of those answers will be ‘no,’ and it’s easier for me to cope with that from afar… I tend to make myself as small as possible in public, to take up the least amount of noticeable space, because it’s difficult to exist like this.”
Chronic illness affects you physically and interpersonally; your pain can affect your ability to connect with others. Finding people who can relate is an essential part of healing that we don’t often get to have. Peers are often confused or frustrated, no matter how many times you (over) explain your situation: why it’s so hard for you/why you have trouble keeping up. Even when people truly want to understand and be empathetic (which is always appreciated), it still leaves you feeling somewhat isolated. With the recent incline of COVID, immunocompromised individuals feel the absence of connection even more.
PART TWO: Unified By Pain
Anyone who has lived in America has personally experienced or knows someone who has experienced major flaws in our healthcare system at some point in time: young, old, or anywhere in between. It’s 2020, and we still don’t have the right to healthcare in this country. The most progressive solution thrown our way is “affordable care,” which isn’t affordable for the majority of the population, and the coverage itself is somewhat a joke. Deductibles, co-pays, and out-of-network costs are major factors in why a lot of people choose to remain without it.
The word “affordable,” in short, is misleading; a misnomer that primarily affects lower/working classes and displaced communities. It is a half-ass and lazy response to a stressful issue that many Americans suffer from and has yet to be resolved. We can all ask “why?” and come up with many different explanations. The simplest conclusion is that more money = good healthcare. Otherwise, you have to measure your pain on a scale before even considering treatment. It is a truth that is hard for most people to swallow, especially those who cannot relate.
We feel hopeless. We do not seek care when we need it. We compromise our health for a steady paycheck (waving at you, capitalism). We avoid going to the doctor because we cannot afford it, whilst measuring our pain with careful consideration before seeking any kind of treatment. We don’t go because doctors fail to take us seriously (see John Oliver’s episode on “Bias in Medicine” from 2019 and “Who Gets to Heal?” by Kim Ruiz). Io’s experiences with doubtful doctors captures how disorienting and frustrating this can be: “I’ve had doctors tell me that I need knee surgery and others who tell me it’s all in my head and I need to go to therapy. I have been prescribed painful medications that I unknowingly never needed. I have been poked, prodded, dry needled, attached to machines, full body bone scans, EEG, EKG, MRI, you name it.”
If we can’t afford professional care, we often turn to an online community: GoFundMe. Don’t get me wrong, I am more than thankful that platforms like this exist, but I’m so angry that we have no choice but to resort to this kind of measure to receive borderline adequate care. And that shows that we still have yet to get anywhere with this argument. We can’t turn to our own government or healthcare system, because it completely neglects its people, time and time again. And not only that, but also because of the ongoing lack of patient advocacy from doctors who look good on paper, but who couldn’t care less if you come in limping after being run over by a bus.
I find myself coming back to this question: why isn’t everyone else taking notice? And furthermore, what does it mean and look like to take notice, from an organizational standpoint — from an uprising standpoint? What does it take to get everybody on the same wavelength? How many rights and how much accessibility must be stripped away before people are ready to revolt? So far, even a pandemic isn’t enough.
We continue to put ourselves at risk for an extra penny, and yet never seem to come out ahead with our health or finances — it’s all just an ouroboros of bad credit, high medical bills, debt, debt, more debt, and low paychecks, since you’re spending most of your time in a doctor’s office. If you already suffer from emotional or mental health issues, this endless cycle of debt paints a vivid picture of the effects this financial stress takes on you.
I interviewed my mother, Susan, who has been suffering from chronic illness and several immune disorders for over a decade. A former teacher, she loved being involved in the community and giving back. Her problems began around 2008, when she had a neck injury at work that led to (what doctors believe but are still unsure to be) the development of several other illnesses, such as lupus, neuropathy, and rheumatoid arthritis. Anytime she had to go to the doctor had to be paid for out of pocket. Her injuries’ butterfly effect led to the discovery of more health issues, and that wouldn’t be covered by her insurance at the time. She filed for disability, Medicare, and Medicaid, but because she and her husband were now both unemployed and on disability, they were at a disadvantage in many ways, to say the least. She explains what it’s like to live under these limiting conditions: “Movement is painful. I live with that pain every day and ‘deal’ with it. You have limited access because of where you live, financial and health status. You can’t afford to move or travel to better doctors. So, you’re sitting and just waiting. My ability to function and work has been lost as well as earning a basic income.”
It’s less than ideal. Some think that having a disability package — or any form of government assistance — is worthwhile. That sense of support hardly exists, and COVID has held a magnifying glass up to these prolonged yet ignored issues.
PART THREE: Chronically Speaking, Chronically Lacking
In the late fall of 2019, I discovered and joined a small, newly formed local online group in the community. The name was simple and straightforward: Chronic Illness Support Group. Finally, I had found others my age who could relate to me. Others who could cry on each other’s shoulders in person, or behind the comfort of a screen.
The idea behind this article has evolved due to the progression of COVID-19. Healthcare workers and the CDC have noted to the public that regardless of trying to be safe and taking precautions, you can still be at risk. Yet we still have people gathering in parks and other public spaces who think “it won’t happen to them.” As someone who is high-risk, the illusion behind such false confidence is easily apparent. As Danielle points out, those of us who are high-risk, “know how to make adjustments to accommodate a failing body, whereas people who have expectations that they won’t get injured or sick … they’ll be really disappointed.”
This privilege of remaining ignorant can also be displayed in loved ones around us. During a recent FaceTime with Danielle, we discussed dating/platonic relationships: how some partners aren’t vigilant or always understanding. Finding a partner willing to understand even if they cannot relate can be difficult. Not having this sense of visibility with a partner can create a sense of panic: if need be, would my partner know how to be there or me? I’ve dated partners who panic, and partners in denial, and partners who gaslight. Most partners cannot understand how to prepare, which becomes frustrating and can even feel a little invalidating.
Across the board, we cry out for someone to understand the pain, the fear, and how real this is to those of us who will be affected much worse than others — and to do so without acting as though our concerns or pain are an inconvenience. Io claims that they started showing symptoms that mirrored COVID-19 symptoms, and that these symptoms spread to each person in their home.
“I was told that, given my compromised immune system, I would have more difficulty with this virus than the average young person,” Io says. “I’ve been lucky enough to have a communal cleaning system at my house with a beautiful group of roommates that have risen up to the safety standards that are absolutely necessary for a person in my position. I know others who are immunocompromised who had to leave their homes to safer spaces because their roommates weren’t practicing the same standards of cleanliness for their specific health needs, and it hurts to know they weren’t supported and didn’t feel safe in their environments.” Unfortunately, that is the uncomfortable truth for most high-risk individuals.
I wanted to ask other medically pre-disposed people living in the age of COVID-19: what are we going to do? When do we take a deep breath and say we’re in this together? And as Danielle says, “Why do we think if every other country impacted is in full quarantine mode that …we’re different?” Those who have “saved money” or will receive benefits/paid time off, are in fairly good health, or have general support feel that they need not worry. These people are likely not A) Working class B) Immunocompromised or C) A part of a minority group such as POC’s, LGBTQIA, homeless, etc.
The negligence of our healthcare industry has affected so many, even those within our medical field (especially now). I spoke to another family member, my sister Lex, about what it’s like to be a medical service worker in these times, who also suffers from several chronic conditions. She battles ovarian issues, recurring cancer, asthma, COPD, fibromyalgia, deficiencies, heart issues, and several autoimmune diseases, just to name a few. She has experienced her own encounters with inadequate healthcare, not to mention malpractice and misdiagnosis from doctors, as well as refusal of care due to insurance limitations. She knows the hopeless feeling of unanswered questions and the all too common misconceptions people have of you.
“I have spent years and years of being misdiagnosed and being tossed around due to lack of good healthcare,” Lex says. “I couldn’t hold down a steady job for years because I was either in the hospital or recovering from surgeries.” Some of her tests at the time were only available out of state and weren’t covered by her insurance, which already averaged at least $400 a month on top of everything else. “All of this,” she says, “could have been avoided with proper healthcare.” This chronically lacking system is the reason a lot of people like Danielle and I refuse to seek treatment. Danielle exclaims, “I don’t go to the doctor. When I was a kid in high school and they were trying to figure out what was going on with me, [we] never got answers.”
Because my sister is someone who works directly with medical insurance, I asked her what she is seeing at this time and what her thoughts are for others like herself. What kind of care are the people who care for us getting? Her answer was disconcerting: “We are putting ourselves at risk all the time. I work with cancer and renal failure patients, who are already high risk of this virus. A common cold for me turns into pneumonia or bronchitis easily. Currently (re: COVID), we are ignored, even those of us like myself with pre-existing conditions. On the flip side, I have bills to pay and can’t not work. People think it’s not a big deal, but people in my field are seeing how many people this is affecting and you can’t judge someone based on their appearance. They can be in worse shape than someone [who is] elderly. I’m glad certain industries are getting coverage during a crisis like this, but it sucks that healthcare workers are not getting their own care in these times.”
And if they do receive care, it can be too late.
“I have insurance for the company I run,” says Lex, “and I still have to pay $300 a month for barely any coverage.” Why is someone who is already high risk and working in a high-risk environment not receiving adequate coverage? Republicans have a pattern of evaluating cases like this on a “human-worth” scale. Who deserves a package? Who should be on the frontlines, risking their own life, involuntarily? This is the perpetual “dog-eat-dog” mentality that many Americans follow. This is partially why we are three months into COVID in America, but we still have no solutions. The numbers in deaths rise, and the worries surrounding health and financial security do not falter either. In America, those who need help the most are not deemed worthy enough to receive it.
Sen. Bernie Sanders spoke loudly and “radically” about a universal healthcare package for quite a while. Wouldn’t that be nice to have right now? It’s time to shine a light on his passionate urges, to acknowledge how imperative even basic healthcare is. It shouldn’t take deaths and illness from a pandemic to understand. And if these deaths and our glaring lack of healthcare aren’t bad enough, the right wing and its constitutents are apparently more concerned with restricting certain rights even further, such as with recent efforts to once again limit abortion access. A Planned Parenthood newsletter stated that “by the end of March, Iowa, Ohio, Oklahoma, and Texas banned all abortions as non-essential health care that can be delayed. Tennessee and other states are following suit.” This is all to no surprise — even now, during the time of corona.
It becomes clearer that oppression is always ranked with higher importance, even amidst a pandemic. I find it quite ironic that we have witnessed people violently policing to reopen the state, holding signs displaying the all too famous “my body, my choice” line. Yet, these are some of the same groups of people who wish to police the bodies of those who can reproduce and would step to the front to argue that “abortion is murder.” But “their body, their choice”? The threat of abortion being removed in a time like this is scary for many reasons, and the dangers forced pregnancy could inflict upon one’s health should never be debatable. For my sister, and many others, pregnancy can impact her own safety. Republicans ruthlessly attempt to take it away with every last breath, even though there are more serious matters at hand; like the fact that there is a shortage of masks and tests to the public. It reads like a death wish.
When we grab the magnifying glass and view our current situation regarding COVID-19, it’s easy to see that we have always faced this authoritarianism. The classism, the racism, the sexism. Those who will be and are affected most by this virus (and pre-virus) are POCs, queers, femmes, immunocompromised, and the working class. The problems that existed were merely easier to ignore for some, but now have grown a head on top of the red, irritable bump. And it’s clearly not going away anytime soon.
“We need a president that will bring and unite this country together; the poor, the sick, people struggling in our world,” my mother tells me. “We shouldn’t have to talk about this — it should be pure acceptance. It doesn’t matter if you have 10 million [dollars] or 10 cents. You should get the same care.”
But it’s not only about political awareness, it’s about having some humanity and letting go of the subconscious need to “otherize” people. People are still dying and many are drawing up wills in preparation.
Io says, “During this pandemic, I keep reading posts saying, ‘we’re all in this together.’ But for someone with any chronic illness, those words don’t fully match our reality. Being immunocompromised results in us constantly reaching for an out-of-reach level of normalcy in our society. It’s incredibly exhausting work that we strive for… and that can take only an instant of doubt from others to dismantle progress. I’d like to be able to step back from these struggles and see people without illness stepping down from the level of normalcy that exists for them, to extend a helping hand to pull us up to that same level. Create space, room, and open up your understanding for us. I want others to level with us because they can comprehend its societal importance for us. We will continue to do it alone, but your support and understanding will help us move forward.”
Regarding the severity of someone’s health, when do we think it became our decision to make? For someone else’s needs? Who gets cared for, and who gets ignored? At what point did we allow our oppressors to infiltrate our own sense of compassion? When did we start believing it was a “dog-eat-dog world”? As Georgia re-opens the state, we ask why we must continue to choose finances over health? I ask these questions, without certainty that they will ever be answered, acknowledged, or resolved. So I sit here: continuing my search for humanity within politicians, within peers, within all communities and all parties; for humanity in the time of corona.
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