I. A chronic problem

The human body is not perfect. In fact, it has never been perfect and it likely never will be. Humans are endlessly diverse in size, appearance, physical and mental abilities, and countless other respects, but all human beings are 99.9 percent identical in their genetic makeup. That remaining 0.1 percent holds important clues about explicit differences that could dictate one’s quality and duration of life. In other words: diseases. Some diseases with a genetic disposition are caused by a single gene and other more complex diseases by multiple genes. On top of that, a complex web of environmental, microbial, and societal factors can influence the prevalence, severity, and mortality rate of people with specific diseases, adding magnitudes of other variables to the mix. Gaining a better understanding of the interactions between genes and external factors by means of genomics is helping researchers find better ways to improve human health and prevent disease. Although, more often than not, this is not a straight path but a multi-dimensional maze where the finish line is often nowhere in sight or might not even exist at all.

This high degree of genetic similarity does not in any way result in meaningful uniformity. Specifically, this type of uniformity is often accompanied by an assumed sense of understanding, which is definitely not the case. The vast spectrum of biochemical and metabolic processes that occur within the human body and the associated mechanisms and pathways that allow for our continued survival remain constant in all humans. In other words, before disease, the way our bodies are supposed to function is going to be the same.

But when diseases enter the mix, these uniform processes can be altered in ways of varying magnitude that immediately refute this assumed equivalency. Going a step further, the type of disease, its severity, and countless other factors including the few that I touched on above further differentiate the state of one’s body and further solidify their individuality (i.e., decrease their equivalency). For example, broader human society typically considers the optimal age for many diseases to occur to be the range of when people are supposedly “in their prime.” The standardization around gender and body type also shares this distinction, as specific disease states are often linked to children, middle-aged, or elderly people, males or females, and over-weight or under-weight individuals. Although not all of these distinctions are baseless, many of them create their own problems before even getting to an actual instance of disease.

Diseases are overly simplified and endlessly complex.

Two people who have the same disease can have drastically different symptoms, responses to treatments, prognoses, and other relevant disease-associated elements. This simple mental exercise creates a clear-cut model of basic epigenetics, which is essentially the study of how this individualized “virtual identity” ingredient kit develops in the context of the human genome and disease. By studying and characterizing the epigenetics of large populations, the incidence, prevalence, morbidity, mortality, and a multitude of other aspects pertaining to a particular disease can be defined. This has allowed us to dive deeper into the genetics of human health and disease than at any other point in human history, ushering in a new age of scientific discovery and getting us ever-so-slightly closer to unlocking the secrets of the human genome.

In recent decades, we have seen exponential strides in science and medicine aimed at such thought-to-be impossible feats. Curing diseases, rewriting genetic code, and the eradication of horrifyingly potent microbial pathogens headline some of the broad categories of accomplishments in these fields. Scientists and historians have concrete records of societies altering their ways of life in response to a specific condition developing among their people for thousands of years. Ancient records from Egypt, China, Babylon, and India from as early as 3000 BC show distinct written works chronicling different medical conditions, remediation techniques, and widespread events of disease. Around 400 BC, the philosophical reflections of Hippocrates explicitly debunked the thought that sickness was attributed to superstition and the wrath of the gods by showing that all forms of illness have a natural cause. It was not until the mid-1600s that microbes were first identified and until the late 1800s that viruses were discovered. Since gaining such foundational knowledge, humanity has made exciting and explosive strides in the life sciences. We are now in an age where we can sequence multiple whole genomes in a day, utilize precision medical technology to fix our bodies over a couple of hours, and create a vaccine for a novel pathogen within a year after being discovered. As amazing as this rapid and unprecedented evolution has been, there is one aspect of human health that has stumped experts since they were identified: chronic diseases.

But in order to effectively talk about something, you need to use your words carefully. A shared understanding of the meaning of central words used in a conversation is absolutely necessary to prevent anything from getting lost in translation. One term that is commonly used in medically-related discussions, in the academic literature, and in policy language is "chronic disease(s)."

Sculpting a clear-cut idea of what technically constitutes a chronic disease might feel like a repetitive or useless exercise, but that could not be further from the truth. There is not only immense variation in the diseases that are considered under this umbrella term but also variation in the time a given disease must be present for something to be referred to as chronic. It is imperative to begin to understand exactly what makes a disease chronic, how it has been applied in society, and why it is relevant to our modern way of life. This discussion may be dense, but running through it at this basic level will help eliminate any uncertainty moving forward. And, in fact, the answer to this question is not as black and white as one might expect.

Let me provide some context surrounding chronic diseases in the US. The continued increase in the incidence of chronic diseases has been well documented since the 1950s and had been given a controversial title that is used among the broader scientific community: the Hygiene Hypothesis. In other words, this concept outlines the inverse relationship observed between the prevalence of infectious diseases and chronic diseases, namely immune disorders such as allergies and autoimmunity, as a result of rampant cleanliness practices in society. The continued industrialization, aging, and shift in societal behaviors are only a few of the main contributing factors to this steady increase in these now common and costly long-term health problems as well as the associated decrease in infectious diseases caused by a solely microbial source (with the exception of the Covid-19 pandemic, of course).

Although this correlation between cleanliness and chronic disease prevalence is difficult to ignore, the term “hygiene hypothesis” is a dangerous misnomer that is directly misleading people and in turn impacting the greater community. If the term held true, this would mean that if people cut back on personal hygiene such as washing their hands, taking a bath/shower, or brushing their teeth, there would not be an impact on rates of chronic inflammatory and allergic disorders. Contrarily, it will, however, increase infection rates. The use of the term gives those who use it a false sense of tying this rather complex concept into a nice neat bow by using catchy scientific-sounding terminology, though the wide embrace of a term that does not accurately or precisely represent the truth automatically skews the information it is meant to convey.

Similarly, I want to introduce an extremely overlooked distinction (and dilemma) in the world of human health: the group of words that commonly appear after chronic. Specifically, the rabbit hole of identifying the difference between disease, disorder, syndrome, and condition. These terms are regularly used improperly and ambiguously, compounding the complexities of the knowledge they are being used to represent. Most of those using these terms allow themselves the comfortable delusion that everyone -- including themselves -- inherently knows what they mean. This is the source of the problem; again, this assumed presumption of uniformity and equivalency.

Here is why: at their most basic levels, “diseases” are specific things, “disorders” mean something is not working right, “conditions” are states of being, and “syndromes” are a bunch of symptoms that often occur together.

To further complicate the matter, popular internet sources often used by the general public to gather medical information are not immune to this discrepancy, amplifying the transfer of inconsistent and often incorrect information. When specific jargon or the use of specific terms has been propagated in the scientific literature and media culture for an extended period, the task of reversing the damage becomes immensely more difficult. Simply put, the problem lies in the complicated and multifaceted nature of these terms -- an unfortunate and unavoidable consequence of a constantly evolving scientific landscape.

So, what does this all mean? On the surface, it means that the variation of public information is not only confusing on paper or screen but also has real implications for those managing medical circumstances that fall under the chronic umbrella. As of 2021, an estimated 133 million Americans suffer from at least one chronic condition, a roughly 15 million increase from 2011, and this number is expected to surpass 170 million by 2030. This means that nearly half of the US population currently suffers from at least one chronic condition. Additionally, half of the Americans who suffer from a chronic illness have multiple (≥2) diagnosed chronic conditions. This outlines the scope of the problem. This cohort of over 133 million people needs to live their lives with increased and varying degrees of caution. A high proportion of chronic diseases/conditions put the patient at a greater risk of secondary developments such as a greater predisposition for developing other diseases, susceptibility to infection/infectious diseases, and many other hurdles that they need to tread around in their daily lives.

The complex and complicated nature of chronic diseases results in populations who subsequently need to shape their lives and behaviors around best maintaining their health and well-being in accordance with the confounds of their disease. In turn, these people actively seek out any current and available information about the disease/condition plaguing their lives. This should be an easy and harmless task, but it in fact might be the most difficult for the average person. Modern society has granted us the luxury of the internet, making the task of searching for information to be as simple as clicking a few buttons, though it also presents a massive challenge: being able to find accurate, well-presented, easy to understand information.

Something about the information surrounding the chronically ill population is getting lost in translation, causing high degrees of misinformation, disinformation, and the entire lack of information altogether.

My goal with this project is to bring these clear societal disconnects into the light, thematically linking different aspects of living with a chronic disease, to create a highly informational experience countering the widespread cultural and medical misconceptions plaguing our society and showcasing the clear regression that has occurred as a result. I will be employing the terms “disease” and “condition” to describe a medically chronic state of being. The classical distinction is as follows: a “condition” conferring a state of illness may be further classified as a “disease”; however, a “condition” might be used in place of “disease” when a value-neutral term is desired. In other words, a condition becomes a disease when the state of being deviates from the normal structure or function to then be deemed harmful to the patient.

The plethora of problems surrounding the relationships and interactions of such chronic populations with society are deeply systemic and have been constantly overshadowed by seemingly endless sociopolitical warfare, failure in scientific and medical communication, and a deeply rooted distrust in modern media culture. Yet the topic is becoming increasingly relevant as the number of individuals living with chronic conditions continues to grow. The uphill battle toward the accurate and digestible portrayal of chronic diseases will require asking some uncomfortable questions, challenging some deeply rooted ideas, and highlighting real examples of how this has caused problems. Although, many of these aspects have now become unwanted commonplace in our society, in ways that nobody could have predicted.

II. Chronically-ill vs Covid-19

If you have gone anywhere outside of your home in the last two years, there is practically a 100% chance that you encountered someone wearing a face mask. In fact, the odds are pretty high that you have worn one at some point yourself. These multi-layered pieces of fabric have been an incredibly effective barrier to a viral pathogen that at one point brought the world to a standstill in a matter of days. The transition to where such public health practices suddenly became a critical expectation came with a slurry of unknowns and charged opinions that the vast majority of people never knew, understood, or actively paid attention to. Terms and labels such as high-risk, immunocompromised, and predisposed have been constantly thrown around to the point that the weight and meaning they held prior to the pandemic have been significantly dampened. Yet as policies and regulations pertaining to the pandemic continue to be softened, the populations to which these descriptors apply have faded from the broader scope of mainstream media, even though they still hold immense relevance to millions of people.

Everything I have seen and experienced throughout the pandemic has left me almost speechless, and not in a good way. I watched as society came to a screeching halt filled with commotion and pandemonium, moved to become more lax and careless for no good reason, back into a lockdown as a result of such carelessness, the inefficient vaccine rollout, and to top it off, a constant flurry of falsified facts and claims. All of this chaos was met with political turmoil, various societal conflicts, emerging viral variants, and a crumbling trust in science, also for no good reason. Even after getting the vaccines myself, I watched with trepidation as people without masks formed crowds, attended large-scale events, and lived their lives as if nothing were happening. The blatant spread of misinformation and disinformation continues to pollute my screen like an incurable poison.

It is the dampness that has saturated life without any foreseeable way to clean it away. A seemingly permanent stain.

Even before the pandemic took hold of society, many of the cautions and preoccupancies that were brought to the forefront of people’s minds were of daily relevance to me. As someone who has lived with a chronic illness for the majority of my life, I found that I have always kept my head on a swivel when going out in public, into a crowded space, or even something as routine as going to school or work. In my case, I am currently on a medication that alters my immune system function and efficacy, resulting in my body constantly being in an immunocompromised state. Whether I realized it or not, the “little bird on my shoulder” voice inside my head was always over-analyzing the situation I was in, for better or for worse, as I subconsciously knew that getting sick would be the last thing I needed to have happened.

Since the start of the pandemic, I have paid close attention to this internal voice. I realized that its weight in my mind became amplified and significantly changed its tone as society continued to crack down in shambles. Even as the general condition of society steadily improved, witnessing how people blatantly turned a blind eye to the virus, vaccines, and other well-grounded facets relating to the pandemic seemed to add fuel to the fire behind this voice. This “pandemic fatigue,” as some experts refer to these behavioral trends, is mainly linked to people simply being fed up with following public health guidelines and wanting to feel a sense of normalcy in their lives after being told that they needed to stray from the routine path ingrained in their minds. It should be noted that the extent to which these behaviors occur has varied by city and state across the US, but the widespread rejection of the pandemic that has grown over time is practically impossible to ignore. Even though new variants are still emerging and science continues to uncover new characteristics of this virus and the disease that it causes, this rejection has seeped to lows that have never been seen in US history, even surpassing the societal meltdown seen during the 1918 Spanish Flu pandemic.

Regardless of these behaviors, one inexplicable and persistent aspect of this resistant behavior has been the ignorance and negligence surrounding the populations that fall under the now charged labels of chronically ill or at high risk for Covid-19. People who fall into these populations have to view the pandemic through a more complex filter than those who do not, as there are myriad confounding factors relevant to their lives that are simply irrelevant to those who do not have a chronic disease.

This inherently creates problems before even getting to disease -- if high-risk populations do not have a clear, straightforward path toward an understanding of how they can best navigate the pandemic landscape, then how are non-affected people going to understand how their actions affect those who fall into these groups? How come the discrepancies surrounding these populations have fallen by the wayside as society continues to open back up toward a “new normal”? Why is the rhetorical weight that these terms so strongly held fading away when the situation these people are facing has not changed all that much and, in many cases, worsened?

I will note in advance that the following discussion will have an inherent density to it. We have witnessed firsthand throughout the pandemic how complex and volatile the situation has been over the past two years. Scientific and medical concepts that were never relevant on a broad scale instantly became an expectation of common knowledge, though any piece of information released one day could be invalidated the next as the situation continually evolved and continues to evolve. With the remainder of this part, my goal is to paint a picture of what this has looked like in society as comprehensively, clearly, and concisely as possible.

Facts hold weight, and their usage can act as a double-edged sword: the information they contain is entirely valid and important in the conversation, but the presentation of factual information requires an objective and often slightly-dry tone. Nevertheless, the information included in the following paragraphs is necessary to create a toolbox of knowledge that will equip anyone with the ability to critically think about this problem. I promise that it will be worth the time to engage.

To put it bluntly, there is no strong answer to any of these questions. The changes I have observed in society over the past few months have not at all checked the boxes that reflect any sort of understanding of these very clear-cut, evidence-backed concepts. The real reason why significant, impactful changes have not occurred does not lie in the fact that these concepts are difficult to understand or implement in society. It is because people are complicated. They have individual opinions and perspectives that they do not want to be challenged. They are inherently resistant to change and fearful of things they do not clearly understand. They are selectively blind to what they do not want to acknowledge and simultaneously steadfast in maintaining what they choose to believe; in other words, narrowmindedness.

Society is broken.

People are hesitant to enact meaningful change because the result would mean a deviation from what they know and understand. It is not a matter of approval, but rather deeply rooted feelings of stubbornness branching out from various sociopolitical ideals, conglomerating into a mess of opinions that make valuable change exponentially more difficult to achieve.

It is the dampness that has saturated present-day life without any foreseeable way to clean it away. A seemingly permanent and vividly visible stain.

On top of this naivety, the healthcare system changed -- at least transiently -- when it shifted to caring for patients with Covid-19 and preventing virus transmission instead of focusing on routine procedures and protocols. In-person visits and services plummeted while telehealth visits skyrocketed. Hospitalizations for chronic conditions unrelated to Covid-19 and for emergencies decreased as beds were actively being allocated to treating Covid-19 patients. In turn, marginalized populations with disproportionately high morbidity for Covid-19 who consistently had seamless, uninterrupted access to necessary healthcare services were being denied that ready access to what had always been guaranteed. This failure came at the lack of multitasking ability in front-line healthcare, as these two entirely necessary services were not happening simultaneously, creating a deeper first in an already suffering system.

The social urgency created by this novel pathogen plunged our world into a “pandemic society” where no one knew or understood the proper course of action, but felt an inherent need for widespread public intervention. Although, addressing and pinpointing social determinants of health in many instances of disproportionately high morbidity for Covid-19 proved to have particularly positive effects on patient outcomes.

Here is a case study example of what this has actually looked like for people who fall into these populations. This survey report was conducted by the National Organization for Rare Disorders (NORD) in April 2020 and consisted of respondents from 49 of 50 states and Washington DC who encompassed multiple disease categories ranging from genetic conditions to immunodeficiencies, and a plethora of other types of diseases considered to be “rare” among the American population. The findings clearly reflect a community directly affected and overwhelmingly concerned about Covid-19 and give some insight as to how the collapse of the healthcare system manifested itself in people’s lives.

This data was collected during the early stages of the pandemic, though it has been increasingly evident and entirely clear that more people have been experiencing “pandemic fatigue” as we pass the 2-year mark since it began. Many people have actively chosen to ignore public health guidelines to live their lives as if nothing were happening, which has corresponded with a direct correlation of the positive case numbers observed over time. These behaviors put the chronically ill populations at a greater risk of exposure to a novel pathogen that they have been tirelessly and meticulously trying to navigate by adding additional obstacles to already treacherous terrain.

Taking these facts even further -- scientifically speaking -- the virus that causes Covid-19 can persist in immunocompromised individuals longer compared to normal, immunocompetent individuals. This means that the virus itself can colonize and proliferate within these hosts for longer periods of time, increasing the chance for mutations to occur to create a potential new strain/variant (and we have all seen why this is problematic). In essence, the weakened immune responses seen in these individuals facilitate an environment where immune-pressure escape mutations -- mutations in the viral genome targeted at escaping specific components of the immune response -- become favorable and easier to achieve. The resulting rapid viral evolution has been thoroughly characterized in immunocompromised patients with persisting infection in varying locations around the globe, and the resulting association continues to be problematic as the pandemic persists.

Common mass-spreading variants of concern throughout the pandemic such as the alpha, beta, gamma, and delta variants have concrete evidence supporting the interaction between the virus and such individuals, showing firsthand how this has manifested itself over time. Further delineation and mitigation strategies to appropriately protect immunocompromised individuals will be paramount to hindering the evolutionary capabilities of a virus that has been able to circumvent the human immune system, diagnostic tests, and specific treatments on multiple fronts. Even so, this task becomes magnitudes more difficult to accomplish due to the lack of emphasis and accessibility of information outlining exactly how immunocompromised individuals should properly navigate the pandemic landscape, leaving a murky path toward implementing any sort of valuable change.

So, why is there a differing viewpoint depending on someone’s disease state? Why does it seem that people have not learned anything over the last two years about how to engage in proper public safety measures and pay attention to people who are in a worse situation than themselves? In truth, there is no clear answer to these questions. All established evidence surrounding Covid-19 and the trends observed since it first appeared have made it overwhelmingly clear that simple public safety measures such as wearing masks, washing hands, and getting vaccinated make a significant difference in the number of people testing positive for the virus, being hospitalized, or dying as a result. These statistics vary drastically across different cities and states as well, as the populations in certain areas express more concern for the virus than others, likely as a result of educational background, socioeconomic status, or other more social factors.

Nevertheless, as society continues to deal with the pandemic and move toward establishing a “new normal,” paying close attention to how these questions get addressed in future legislation to accommodate populations who remain at a higher risk for serious disease will be an important distinction to observe and map. Only by learning how the specific shortcomings that occurred during this pandemic shaped how such populations navigated the societal landscape will we be able to act smarter and more swiftly in getting the problem under control, keeping it under control, and improving the situation in a more educated manner.

III. The visible invisibility

Imagine suffering from debilitating chronic pain or constantly dealing with weakness, dizziness, or fatigue. Every step you take or every time you leave your house causes feelings of discomfort, and it is perpetually at the forefront of your mind. This internal battle you are fighting takes a continuous stream of mental and physical energy, and something as routine as going about your daily tasks can be extraordinarily taxing. However, those looking at you may have no indication of your suffering, let alone that you have a chronic illness. This is what it means to suffer from an invisible illness.

According to the Americans with Disabilities Census Report conducted in 2010, only ~6% of people with reported disabilities use visual supports that allow them to go about their lives (i.e., crutches, wheelchairs, canes, etc.). The overwhelming majority of those living with chronic disease-associated disabilities are living with what is referred to as invisible illness: a disease and/or condition that has no empirically verifiable or visibly measurable symptoms or indications. In other words, someone suffering from an invisible illness shows no externally visible signs or symptoms to an outside observer. These people can appear healthy and commonly blend in with crowds to the point where one would struggle to tell that they were actively suffering from a chronic disease or condition.

The truth behind their situation becomes evident when they engage in behaviors that society generally associates with physical disabilities, such as parking in spots reserved for people with disabilities, gaining priority access to services that typically require cueing in a waiting line, or as we have seen with the pandemic, being able to get vaccinated before other individuals of the same age demographic. The sharp glares and gossip that these behaviors often elicit are unfortunate persisting consequences of a society where these “privileges” are commonly associated with populations that fit the stereotypical mold of an individual inflicted with a condition or disease: the elderly, handicapped, specific gender or cultural demographic, etc. These preconceived notions of the general expectations surrounding diseased individuals are not widely applicable, though they are widely accepted despite their inaccuracy.

There is a famous quote from legendary football coach Bill Parcells who was notorious for turning around underperforming teams into winning powerhouses that reads “You are what your record says you are.” When it comes to managing chronic diseases, the performance of the US health care system has been inadequate and flat-out unreliable, though this analogy still holds valid given how it has performed. In football, the quarterbacks and receivers usually get the glory for scoring touchdowns, but their job is made possible by the lineman providing them time and protection to make the necessary plays to win games. For this reason, smart teams heavily invest in their linemen. Analogously, in health care, the glory and financial rewards typically go to surgical and medical procedures, devices, and medications as well as to the providers, delivery organizations, and companies responsible for such interventions; in other words, the quarterbacks and receivers of the system.

However, this simple football analogy is not totally synonymous.

The unavoidable and entirely necessary trench battles of chronic disease management -- disease monitoring, coaching for self-management and behavioral change such as diet and therapy, and mitigation of social needs -- are poorly reimbursed, though remain critical for the individual maintenance associated with such diseases. This disconnect is due to the US health care system blatantly undervaluing human relationships, connections, and longitudinal care, so although this fact may seem surprising, it only makes sense that it falls short in this extremely crucial area.

It is the dampness that has saturated countless people’s lives without any foreseeable way to clean it away. A seemingly permanent and selectively visible stain.

* * * * *

In a shifting of gears, take a moment and watch the video below which contains clips from the 2020 film The King of Staten Island directed by Jud Apatow and written in conjunction with Pete Davidson. This film depicts the story of Davidson dealing with the loss of his father due to the events of 9/11 in NYC, and this video contains instances where it touched on Davidson’s relationship with Crohn’s Disease -- a chronic autoinflammatory disease of the gastrointestinal tract.

Not only is it a really enjoyable movie, but the scenes included in this video portray accurate examples of what someone living with Crohn’s -- an invisible illness -- might deal with on a daily basis. Even though these scenes come from an outward-facing, scripted film, the realistic angle employed by Davidson to convey instances in his life where his disease played a role creates scenes that look like they were recordings of events that actually occurred in his everyday life, making them perfect to frame the discussion I have prompted with the previous sections of this project.

(1) In the first scene, Davidson is engaging in an argument with his mother, portrayed by Marisa Tomei. With the few lines of one-sided dialogue spoken by Davidson, he rants in a somewhat angry tone: “I have Crohn’s, okay, there is something wrong up here, I can’t find my watch….” Davidson has been publicly open with his history of dealing with Crohn's, mental health issues, and substance addiction, and these facts remain congruent with his character in the film: a semi-autobiography that is mostly non-fiction with some fiction added for cinematic appeal.

This instance presents a relatively common dynamic in the lives of some people living with Crohn’s, and one factor that is commonly overlooked in society as being connected to chronic diseases. The broader category of disease that Crohn’s falls under is called inflammatory bowel disease (IBD), which includes a couple of diseases characterized by inflammation in specific sites along the gastrointestinal tract caused by the immune system mistakenly attacking healthy tissue. The symptoms and damage caused by IBD can have systemic effects on the body, and studies spanning decades have shown a connection between IBD and the secondary development of various mental health conditions. Additionally, this relationship can go both directions, where the diminishing mental health of someone living with IBD can further exacerbate symptoms.

This phenomenon is commonly referred to as a component of the gut-brain axis, which is a broad term used to describe how the vast nervous connections to and from the brain are essential for controlling gut health and function. The sheer complexity of the gut-brain axis has been studied since the 1960s and the knowledge in this area continues to expand on multiple fronts utilizing different topics to frame the relationship: diet, nutrients, disease, etc.

In relation to mental health, for instance, changes in the gut microbiome and inflammation of intestinal tissue have shown to affect the brain and have been explicitly connected to the development of symptoms reminiscent of those commonly associated with Parkinson’s disease, autism, stress, anxiety, and depression, among others. Highlighting the example of the connection between IBD and mental health as well as actively portraying the very deep connection between gut and mental health will continue to be necessary to spotlight this problem that a high percentage of people living with these conditions deal with on a daily basis.

(2) The second scene portrays an argument between Davidson and a character in the film named Kelsey, who is inspired by his previous relationships as an amalgamation of his exes. In this dialogue exchange, Kelsey says “you always look sick and pale like you have a disease but you don’t know it yet but you literally look like if I touched you you would just turn to dust.” Obviously, the argument portrayed here has been dramatically shaped to suit the narrative of the film, but this exclamation perfectly encompasses the nature of invisible illnesses. Many illnesses which fall under this umbrella term tend to share relatively common symptoms such as fatigue, malaise (a general sense of being unwell), persisting aches or pain, and lack of concentration or focus, among others.

As a character engaging in this conversation, Kelsey clearly shows a lack of understanding of Davidson’s state of being, which is shown by her sharp, dispassionate remarks. Having a chronic condition is often an uncomfortable topic to bring up in regular conversation, so this is another aspect that is well portrayed in this scene. This viewpoint is one that is often reinforced by opinionated media, such as those presented on mainstream newspaper or magazine sites, where there are sections dedicated to the presentation of articles taking such stances. Although, this is congruent with the problem I outlined in the previous parts of this project in that much of the information portraying chronic diseases and the people living with them contains incorrect or inaccurate information that results in a wrongful skewing of the truth.

Many of the articles in this domain focus on the social side of chronic diseases, and a recurring topic that receives plenty of attention focuses on how those with chronic diseases navigate relationships. Even so, many of these articles give superficial opinions offering ideas or advice that are nothing more than opinionated claims, meaning that they need to be taken with a grain of salt. The most effective portrayal of this topic is accomplished through the use of medical and psychological evidence and/or anecdotes that paint a cohesive objective narrative that the author can then insert their point of view through editorial-esque commentary. By transferring the focus of the piece away from baseless claims to more evidence-backed logical thinking, not only does the topic become more clearly presented, but the take-away points hold more weight for the reader.

As nice as this might look on paper, the reality is often not as clean. The average American citizen statistically can read at about an eighth-grade level. This being the case, as pessimistic as this may sound, many readers are not able to digest these types of writing. This means that many of the intentions and goals that the author intended to achieve with their piece as a public-facing work are not picked up or understood by these readers.

This is exactly what happened during the pandemic.

New pieces were being published like wildfire, many of which portrayed the same information, contradicted existing information, or challenged the norm that had been disrupted. Topics that were inherently difficult to explain were being covered by people with little-to-no qualifications to do so, adding fuel to this fire in creating a rampant storm of information without a filter to check the validity of their claims.

So how does this all relate to this second scene? In a few words, incompetence and facing the uncomfortable. The fact that the populations who deal with chronic diseases feel pressure and a general sense of uneasiness about having conversations about their condition goes to show how the environment shaped by this confounding information crisis does not favorably allow for seamless integration of this topic. Additionally, many of these articles portray people with chronic conditions as having a lower quality of life compared to those who do not, which is flat-out wrong and insulting. These authors overlook the opportunity to make the point that these are people who have a disease or condition, but they themselves are not said disease or condition: a small distinction, but an immense difference.

(3) The third and final scene from this video shows Davidson at a baseball game with a few other characters portrayed by Bill Burr and Steve Buscemi: firemen who worked with his father before he passed away. In this dialogue, Buscemi’s character, Papa, asks if Davidson wants a hot dog to which he responds “oh no, I can’t, I have Crohn’s.” As simple as this statement was, Papa’s immediate reaction was to ask for further elaboration about Crohn’s, to which Davidson provides a very simplistic explanation -- one that has been shaped to sound blunt and comical for cinematic purposes. Papa then thanks Davidson for sharing in a slightly dismissive tone followed by Burr’s character, Ray Bishop, saying “next time just stay I don’t want a hot dog,” and Davidson closes out the exchange by saying “I’m just trying to spread awareness.”

Frustration.

Guilt.

Exhaustion.

Embarrassment.

This is a prime example of why the trepidation that people with chronic diseases internally manage in conversation is well-founded, and the four words above exemplify only a few feelings that experiences of this nature can elicit. Responses of this nature not only frame the disease in a solely negative light but also put blame on the person attempting to share more about themself for hindering the flow of conversation and dampening the mood. In these situations, it often takes time and courage for someone to feel comfortable enough to bring up their disease in conversation, as it is something that not everyone is readily open to sharing. The volatility in the potential responses to learning this information is something that tends to constantly live in the back of these individuals’ minds, as society generally stigmatizes disease and medicine in a negative light.

The road to receiving a diagnosis of a chronic disease or condition is rarely a smooth or easy path. It is typically speckled with cracks, potholes, and accidents that make it challenging to navigate. In other words, one usually must deal with the arduous and daunting activities of medical tests, hopping between medications, and maybe even between doctors in order to discover what is wrong with them and get their symptoms under control. Sprinkled within this time also could be extended stays at the hospital, restless nights curled up in a ball or on the toilet, or other debilitating circumstances that disrupt one’s daily way of life. Receiving a diagnosis can be a breath of fresh air for these people, as it gives them a name to associate with how they feel, but it also means that they finally know what exactly is wrong with their bodies.

Invisible illnesses impact people in all aspects of their lives, whether it be personally, socially, or professionally. They can severely impact the ability to routinely work and, in more serious cases, lead to negative effects such as added stress, social isolation, and depression. Simply because external observers cannot visibly see symptoms of someone in this type of very real situation, there is an inherent tendency for them to be less empathetic and understanding of the people suffering from them. This “lack of validation,” or lack of belief that someone was actually suffering from what they claimed, is often one of the most significant challenges faced by someone dealing with an invisible illness.

The most common of these instances usually applies to people dealing with chronic pain, which is a symptom that can be applicable to a wide range of diseases or conditions, so this ambiguity can act against someone attempting to explain their situation. The feelings of hopelessness and isolation that these interactions inevitably contribute to can have confounding effects on the lives of these individuals, which can easily worsen their state of mind and, in turn, impact their state of being.

* * * * *

Similar to the discussion I prompted about Covid-19, the perspectives and social reactions surrounding invisible illnesses are deeply rooted in people’s unease toward the discovery and acceptance/rejection of what is unknown to them. Whether key beliefs are revised over time -- such that unknowns can be translated and transformed into knowns through basic human behaviors of curiosity, empathy, and humility -- depends directly on how resistant people are to entertaining ideas that are new to them. Much of the information surrounding conditions such as invisible illnesses is tainted with negative connotations that have been ingrained in American society. Many of these instances have ties to now outdated claims, such as race, ethnicity, and socioeconomic status seen during historical events such as the Tuskegee syphilis experiments that went on for decades in the mid-1900s or the AIDS epidemic of the 80s/90s.

Regardless of the historical relationship between invisible illnesses and American society, the Covid-19 pandemic has only acted as a catalyst to help reveal exactly what this dynamic has looked like in modern society and how it needs to be addressed. The clear and widespread faults of the US healthcare system have only exacerbated the problem, further disconnecting these incredibly relevant ideas from any substantial remediation. Generally, this system is considered to be of high cost, but not the highest quality -- a pretty counterintuitive notion given its purpose and function. Although the pandemic has dramatically affected our way of life and continues to alter how society looks moving forward, very few changes that would positively affect this relationship are being seriously considered.

When something is broken, it is common sense to fix it.

To what extent this actually happens, it’s tough to tell. The pandemic has also revealed that medicine has been heavily politicized, leaving many of the hard-hitting, significant decisions pertaining to medicine and healthcare to people with little to no education or knowledge in these areas. When politics gums up the works of an entity that already struggles to function effectively and efficiently, that only spells a recipe for disaster. The majority of diseases and conditions that fall under the invisible illness category require constant intervention and maintenance to allow people dealing with them to live “normally.” So, naturally, the system needs to be able to accept and manage these populations.

Regardless of the extent to which meaningful change is brought to fruition, an object at rest remains at rest, and an object in motion remains in motion at a constant speed and in a straight line, unless acted on by an unbalanced, outside force. This may be the definition of a fundamental law of physics, but it perfectly adds agency to the dynamics surrounding invisible illnesses in society. In other words, if nothing new was to happen, things would remain as they are, but if something different were to happen -- policy reform, social movement, etc. -- then the momentum would undoubtedly shift in a different direction. The problem lay in the stagnancy of the circumstances, but the pandemic acted as the “unbalanced, outside force.” Not only has the pandemic brought the shortcomings of how society handles invisible illnesses into the spotlight, but it has clearly pointed toward what needs to be changed to repair the damage and alter the trajectory of chronic diseases in society toward a more understanding and accepting landscape.

IV. Chronically ill-conceived memories of the future

“The way a person looks reflects how they are feeling physically...”

“Invisible illnesses are ‘all in the person’s head’...”

“Resting up will make people feel better...”

“Chronically ill individuals are lazy/unmotivated/unreliable...”

“Chronic illness makes life miserable...”

“Chronic illness affects everyone the same...”

“Those in chronic pain are drug seekers...”

“If a person suffering from a chronic disease is

enjoying themselves, they must feel okay...”

Nearly everyone experiencing a chronic disease or condition has to deal with some degree of negativity from others in regard to their health. Whether they are spoken directly by another person, read online, or presented through some form of modern media, these assumptions and criticisms often play a role in how an individual dealing with a chronic disease or condition views themselves, carries their social persona, and manages the relationships they engage with. The context surrounding these populations as well as the public-oriented portrayal of what is realistically associated with them is a major contributing factor to the generation of these types of statements, exemplifying one major reason why this is a rampant problem in our modern society that needs to be addressed.

One place where this wrongful portrayal of chronically diseased individuals has become greatly integrated into American society is through the advertisement of drugs and other treatment options from Big Pharma. This term is used to refer to the global pharmaceutical industry, initially connoting a “demonized” form of the industry claiming that these companies operate for sinister purposes, but later sticking as a descriptive umbrella term. Today, Big Pharma includes companies that focus on the development and manufacturing of new drugs, medical devices, or other biomedical-related technologies. Although pharmaceutical companies have played an integral role in improving the state of the Covid-19 pandemic in a remarkably short period of time, there has been plenty of resentment oriented towards the unseen intentions of these companies in recent decades. The products that they create have improved the lives of countless people, but there are always two sides to every coin.

Pharmaceuticals are a business. Regardless of the true intentions of the company, the main objective of pharmaceutical companies is to make money. There is even a built-in grace period approved by the FDA that guarantees exclusivity of a new drug once it comes to market, meaning that generic versions cannot be approved for use for at least six years. In other words, this essentially grants the company which pioneered the drug a monopoly on its applications in practice, giving them full control of how they market it. For reference, generic name drugs -- a drug that contains the same chemical substance as a drug that was originally protected by chemical patents -- typically cost about 80% to 85% less than branded drugs. That means any patients who might require the drug for the improvement of their health are locked into the requirements of the original brand until that period expires: a very one-sided and unhealthy dynamic.

Companies that find themselves in this favorable position, being that they are for-profit businesses, tend to take advantage of that granted power. In this sense, as any large-scale business would, they take full advantage of their advertising campaigns to capitalize on proliferating their product. In today’s day and age, it is almost impossible to watch or stream visual content without coming across an ad for a pharmaceutical drug. Whether the advertised treatment is for anxiety, depression, an autoinflammatory condition, or even cancer, these direct-to-consumer ads have become common accompaniments to mainstream media entertainment and subsequently more difficult to avoid. This deluge of ads can be overwhelming, and more often than not, the information presented is incomplete, biased, or confusing.

Similar to the common saying “Google is not a doctor,” the main purpose of these ads is not to educate consumers in an accurate and thoughtful capacity but to sell a product, and the language used in them makes that very clear. These people know what they are doing. They tactfully employ anecdotes that make their product seem undeniably good and try to show that those who use it have nothing but positive reviews about their experience with the product. Something that should be a straightforward, objective portrayal of a product that could have serious implications on one’s life is muddied with subliminal messages that unfortunately need to be carefully considered.

Some examples include:

“A leading treatment for this condition.” → How many other drugs are available for treating the disease/condition in question? Perhaps there are tens of options, maybe there are only two or three. Knowing what the other options are and how they compare is vital information to making such a heavy decision about one’s health, yet it is unlikely that this additional information will be mentioned in such ads.

“No other treatment has been proven better.” → This directly suggests that the advertised treatment works well, yet it might only be as good as (and no better than) other competitors. Also, drug ads are unlikely to mention the option of not taking any drug for the disease/condition in question, even though many minor symptoms and ailments get better on their own over time.

“In clinical studies, this medication proved more effective than the standard treatment.” → What is the standard treatment? How good is it at treating the disease/condition in question? If a drug only helps ⅓ of people with a disease and standard treatment helps ¼, the added cost and risk of new side effects of the advertised therapy may not prove to be the prevailing option.

“I don’t care about clinical studies… this drug gave me my life back.” → One person’s story of unlikely improvement with a particular treatment may be undeniable, but the data collected from clinical trials and studies far outweigh this statement. Studies are indispensable. Otherwise, we would be taking the advice of a proverbial snake oil salesman recommending unproven and potentially dangerous substances because one person said that it worked for them. And in the context of these promotional ads, that “it worked for me” person is often a paid actor or spokesperson reading a script.

“For some, one pill is all you need for 24-hour relief.” → How many are some? What exactly does “relief” mean? If 1/100 gets this relief, the drug may be less effective than the ad suggests. If the drug reduces pain by 15% or extraneous mucus production by 10% for 24 hours, then that is a rather modest benefit with the chance of developing side effects that might put this person in an even worse disease state. A competitor’s drug might reduce the symptom in question by 80% or even close to 100%, but that information will almost never be included in the company’s ads.

As you can see, something as passive and harmless as a pharmaceutical advertisement is riddled with selectivity on the company’s part to shape their product for the greatest appeal to the unaided consumer. The endgame of these ads is to attract new customers, but without the necessary knowledge that the ad is not the whole story, it can be an appetizing yet dangerous lure. Additionally, if a patient is so inclined to bring up an advertisement to their medical provider or doctor, they can be often surprised to hear about important information not included in the ads. An example of this could be that the newest and markedly most effective drug for an autoimmune condition such as rheumatoid arthritis is administered via injection under the skin or intravenously, yet many ads for these drugs quickly glaze over or never mention this detail.

Also, these ads tend to “medicalize” really common bodily occurrences, such as everyday aches and pains, fatigue, and heartburn, while calling for prompt treatment with their product. For some people, this constant barrage of information may act in the same way as “Dr. Google” by inducing feelings of anxiety or terror, as if a new deadly or debilitating condition lurks around the corner and you should hurry to investigate treatment options with your doctor.

So, if one of these advertisements catches your attention because you may feel it holds some relevance or parallels to your own life, take a step back and think about the whole picture. Be smart. Be wary. Even if information in a pharmaceutical ad can be considered accurate, it may not be balanced, thorough, or unbiased. It is a cut-and-dry instance of buyer beware, putting the authority in the consumer’s hands to make an educated decision to potentially consider the drug in question in consultation with a qualified medical professional. This pharmaceutical advertisement discussion is a line of thinking that I feel is an imperative distinction for someone living with a chronic disease or condition to be able to make; however, its inherent complexity is often exploited for the sole benefit of these companies at the expense of those on the receiving end.

*****

Illness is not a state of exception, but the reality of being embodied.

Now more than ever, science, medicine, and public health have firmly stitched themselves into the seams of modern American society. This obviously varies by geography across the country, but the pandemic has directly acted as a catalyst to open eyes to the power and weight these facets hold in keeping the gears of society in motion. Every day, new information is being discovered, new drugs are being developed, and new people are being diagnosed with diseases and conditions that might not have ever been a part of their lives. These disciplines are here to stay, for better or worse, to further our understanding of the complex, diverse, natural human-driven world that we live in.

Whether it is a lack of understanding, qualms in quick judgment, or even conforming to stereotypes, there is a clear disconnect between how these populations should be treated and the reality of the matter. This multidisciplinary dynamic essentially boils down to a kink in the chain between the establishment and dissemination of relevant, public-facing information and the portrayal, digestion, and acceptance of said information by those on the receiving end. To what extent this disconnect gets repaired for the better remains to be seen; however, with everything we have lived through over the past two years, a refreshed perspective presents itself -- ready and ripe for the taking. Correcting this chronic problem will likely be a long and arduous process, but if history has shown us anything, it is that with enough persistence, drive, and effort, meaningful change will soon follow.