Following the onset of COVID-19, it is unsurprising that for many individuals the pandemic has created additional stress, anxieties, and worries surrounding health related concepts. However, the fear of illness and the associated implications of illness are a continuous reality for individuals with chronic conditions. Whereas for a majority of society COVID was their first exposure to this lifestyle and living from home, some have been living in this way for years. Society’s experience with COVID reveals a small glimpse into one aspect of living with a chronic illness, take it as a lesson and a blessing.
People with chronic illness are used to having an increased awareness of their own health, the health of others, and have daily experience calculating risks. In this regard, calculating risks refers to impacts on personal health and pain severity, not deciding whether to follow state guidelines or requirements for the sake of others. With COVID, individuals with chronic illness are among the group of the most vulnerable and at-risk for serious complications. They may be unable to go out in public at all, even while wearing a mask, because the risk is too high.
People with chronic illness are used to taking precautions for their health, such as carefully planning their days, going to various doctor appointments, doing medical research, eating certain diets, and taking medications and supplements. They are used to spending a lot of money on medical care and accept that they will continue to do so for the rest of their lives. With COVID, some people have gained a glimpse into this lifestyle by taking precautions to boost their immune system, washing their hands more often, disinfecting surfaces, and hopefully wearing a mask. With the amount society hates having to wear a mask, where some refuse and others don’t wear it properly, it shows how little they are used to adapting. Think about instead of having to wear a mask all day, you had to function through severe pain in a majority of your body plus additional symptoms; suddenly having to wear a mask is not bad at all.
People with chronic illness are used to staying at home, being restricted in their activities, and being alone with their thoughts. They are used to not feeling well enough to attend social gatherings, run errands, go out to restaurants, go to school, or go to work. Since COVID, many people occupy their time trying new hobbies, cooking, working out, watching new series, calling friends, etc. However, this productive use of time is not always an option for individuals with chronic illness as their time may be spent debilitated in pain. As individuals during the pandemic complain of boredom, they are not recognizing how fortunate they are to physically be able to do anything more than lay in bed. Since people with chronic illness may physically be unable to fill their day with activities, they are used to being alone with their thoughts without outside or social distraction. People with chronic illness have a built-up mental resilience in being alone and coping in difficult times. Since COVID, society acknowledges the impact that staying at home has on mental wellbeing; something people with chronic illness have already been experiencing with little to no outside understanding. Remember, for some, their daily routine did not change after quarantine because they have already been living this way.
People with chronic illness are used to living in a state of uncertainty, where it is unknown what to expect next. The uncertainty arises everyday as symptoms and pain are unpredictable and also impacts the ability to plan for the future, or even have any idea of what to expect. However, with COVID, there is an expectation that the virus will eventually be under control, whereas with a chronic illness, you never envision a future without it.
Some people feel as though their whole life has been put on pause during the pandemic, but a chronic illness never stops, even when the rest of the world does. Whereas some complain about canceling travel plans, boredom, not being able to hang out with friends, and having to work from home, people with chronic illness suffer from limited access to medical care. Some doctor appointments can be done virtually, but when trying to pursue additional medical answers and tests are necessary, these critical appointments are put on pause. Similarly, treatments and procedures that are deemed non-urgent, such as pain treatments, are delayed. This leaves people with chronic illness at a lack of resources which ultimately may worsen their health, pain severity, and overall conditions.
People with chronic illness are used to finding the positive in negative situations and personally adapting to make the best of circumstances and limitations. However, with COVID, society has adapted by allowing students to attend virtual classes, employees to work from home, extra governmental aid, and socially transitioned to online format. For me, the main change in my daily routine since COVID was having school online versus in person. Although a majority of my classmates hated the online format, this is physically the best option for me, and I loved it in comparison to in-person classes. However, taking classes virtually in this way prior to COVID was not an option even through the disability center at my college. Similarly, the pandemic allows various job positions to be done from home, whereas people with chronic illness typically lack the accommodation option to work from home and instead lose their job. Furthermore, the government has provided extra forms of aid and accommodations during these times, whereas people with chronic illness have to fight for years to potentially receive disability support, often getting denied. Even socially, events, appointments, and social gatherings have transitioned online. Prior to COVID, people with chronic conditions were used to being left out as they were unable to physically attend and had no digital alternative option. Once COVID is under control, most will go back to their regular lives and people with chronic illness will likely be stripped from the fundamental accommodations and accessibility again. Society doesn’t accommodate for disability to the same standard of accessibility during a pandemic; society only shifted to these accommodations to allow able bodies to continue functioning.
People with chronic illness, even those young in age, have a different perspective and way of thinking. As individuals with medical issues are more likely to take precautions and be mindful of their health and those around them, it becomes apparent that most healthy adolescents don’t take the same precautions. Since COVID emerged, I realized that my age group is among the most problematic in refusing to follow guidelines, perhaps because they aren’t worried about getting the virus themselves and are ignorant (or selfish) in the fact of how the virus spreads. These individuals are living with a sense of carelessness and disregard that individuals with chronic illness cannot live by. They are going out partying on beaches because they don’t want to “waste their prime years” without realizing that for some, their prime years are spent at home regardless of a pandemic. Moreover, their carelessness signifies a downplaying of the importance of protecting vulnerable people’s lives.
People with chronic illness are used to living in an ableist society. Officials and news coverage often use ableist statements of “reassurance” that those most at risk are the elderly and individuals with pre-existing conditions, where these groups are demoralized and made to feel like a burden to the rest of society. The concept of invisible conditions also brings out ableist behaviors as society fails to recognize that a young, healthy appearing individual can be immunocompromised and at high-risk. Furthermore, people ignorantly believe that the virus is a scam with the reasoning that the largest percentage of deaths are people with pre-existing health conditions and elderly (aligning with information since the onset). In using this logic to claim that the virus is over-exaggerated, it is ultimately demonstrating that these people do not find the lives of the elderly and the lives of those with pre-existing conditions to the same moral standard and seriousness that they would if the largest percentage was made of perfectly healthy individuals. This is an ableist reaction and causes people to minimize the virus because they are fortunate to not fall into the categories of high-risk. Another possibility could be that individuals prefer to view COVID as “not a big deal” as a form of emotional protection because they are unsure how to accept unsettling information; something people with chronic illness are used to doing. Arguing that the country should open up and operate as it did prior, while knowing that doing so would increase the number of casualties for those at-risk, is an ableist perspective stemming back from eugenic beliefs that the lives of people with medical conditions aren’t equal to a healthy person.
Moreover, people with chronic illness are used to living in this altered reality where the limited access to everyday life makes you feel powerless, except people with chronic illness are used to living this way while everyone around them lives normally. For those without chronic conditions, I hope quarantine can help shed insight into a reality that some individuals will continue to live. I hope that society can use the pandemic as a representation for one aspect of chronic illness and grow more understanding of the other aspects; including various symptoms, unpredictable health, severe pain levels, difficulty being believed, and the life-changing social, emotional, cognitive, physical, and economic impacts. I hope that those who know someone living with a chronic illness can reflect on this experience and use it as an opportunity to reach out and check in with them now and again. I hope that society can grow to understand that staying at home is not the most difficult aspect of having a chronic illness, but rather one small additional factor. I hope this pandemic can create more empathy, understanding, and respect for individuals that continuously live in these circumstances without adequate accommodations or awareness. I hope as society begins to open up again, establishments can reflect, be more inclusive, and be willing to accommodate. I hope as life returns to normal for some, they grow more appreciative of the small moments with loved ones and the freedom that their body and health allows.
Above all, I wish everyone health and happiness during these difficult times,
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