Awaiting medical test results has become a new social norm for patients and non-patients alike as a result of the COVID-19 pandemic. Perhaps for the first time, the weight of these results and their diagnostic labels have given the broader public a glimpse into the world of those who are used to it-- the world of chronic illness patients. While chronic illnesses don’t carry the weight of fearing contagion, they make up for that weight in needing proof to be recognized. Both are entirely reliant on the results to know the impact on their lives. Many chronic illnesses can be referred to as “invisible illnesses'' because they do not present themselves with identifiable presentations or symptoms, and consequently tend to be overlooked both in and out of a healthcare environment. In a New Yorker Article entitled, “What’s Wrong with Me?” by Meghan O’Rourke, who lives with chronic illness, she reports, “A 2004 Johns Hopkins study found that nearly two-thirds of doctors surveyed felt inadequately trained in the care of the chronically ill” [1]. COVID-19 has garnered an entire population’s attention on what it means to be diagnosed and how beneficial effective care can be. In contrast, COVID-19 can also demonstrate the power of when that is missing. However, Chronic COVID Syndrome may just be the means of bridging the gap between effective care and the lack thereof in chronic illness.
Some of the most common chronic illnesses include Lupus, Crohn’s Disease, Lyme’s Disease, fibromyalgia, Hashimoto's thyroiditis, and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), but the number and range of conditions is unknown because of the inability to fully comprehend chronic illness etiology [2]. Frequent symptoms can be physical and/or psychological such as sleep disorders, fatigue, brain fog, depression, and anxiety. These symptoms can arise either as a direct result of the condition itself or may be induced from the difficulty of having to prove the condition’s existence to be acknowledged [3]. These illnesses are persistent and debilitating, and even still, they tend not to garner adequate assistance and resources. Carol Head, who is the President and CEO of the Solve ME/CFS Initiative, described patients who “have been housebound for months, or even years, at a time—in part because their vague, complex, and frustrating symptoms have been down-played, misdiagnosed, or ignored by medical providers” [2]. According to American Autoimmune Related Diseases Association (AARDA), it takes five years on average to get a sufficient diagnosis [1]. Because these illnesses have such an effect on mental wellbeing, they are also closely tied to the discourse of psychosomatic conditions and diagnosis and tend to get viewed as a manifestation of emotional distress [1]. These illnesses often are then written off or not pursued further, a powerful commentary on how emotional distress is addressed in the current health climate and the overall lack of mental healthcare available, but also leaving patients doubting the validity of their physical symptoms.
Interestingly, chronic illness has a far higher prevalence in women. This raises the question of how much the emotional distress and psychosomatic write-offs are linked to a historical writing off of women’s medical symptoms to conditions like “Hysteria” and placing blame on the woman [4]. Virginia Ladd, founder and director of the AARDA explains: “More than 40 percent of women eventually diagnosed with a serious autoimmune disease have basically been told by a doctor that they're just too concerned with their health or they're a hypochondriac” [5]. Meghan O’Rourke states in her article that 75% of autoimmune patients are women, and said that “As it is, many clinicians assume that the patient, who is often a young woman, is just one of the ‘worried well’”. This atmosphere of disbelief, of blaming the mind, of roots to hysteria and the psychosomatic, place these women in a position of self-doubt and losing their grip on their own patient experience. O’Rourke felt, “It wasn’t just the ‘loss of self’ that sociologists talk about in connection with chronic illness, where everything you know about yourself disappears, and you have to build a different life. It was that I no longer had the sense that I was a distinct person”.
While COVID-19 is becoming the basis for what constitutes efficient testing, diagnosing, and recognition as a whole, Chronic COVID Syndrome has had a response much more similar to these other chronic illnesses and experiences like O’Rourke’s. Chronic COVID Syndrome is the condition where patients continue experiencing COVID-19-related symptoms following their actual infection for weeks, months, or without end [6]. Reports of symptoms include brain fog, fatigue, and difficulties with memory and concentration, all of those that seem to be getting overlooked in chronic illness outside of the COVID domain [7]. With patients experiencing this calling themselves the “Long-haulers”, Chronic COVID Syndrome struggled to get validation and consequently became “the first illness created through patients finding one another on Twitter: it moved from patients, through various media, to formal clinical and policy channels in just a few months” [8]. Professor Paul Garner, an infectious disease specialist who has been experiencing Chronic COVID Syndrome explains, “This stuff is real. People are ill. Doctors need to stop diagnosing this as anxiety. We have messed up before, let's not do it again with long term Covid-19 illness” [9]. There is significant attention from all angles on tracking COVID-19 responses, and therefore Chronic COVID Syndrome serves as an example to bring light to the overlooking of invisible illness. While men seem to be experiencing higher mortality rates. women appear to be affected at a higher rate than men for Chronic COVID-19 Syndrome, analogous to other chronic illnesses. Women appear to be experiencing post-viral fatigue at a rate of 2:1 with men [9]. In addition, a study done at Assistance Publique–Hôpitaux de Paris showed a 4:1 ratio of women to men experiencing Chronic COVID Syndrome symptoms [10].
Not having symptoms and experiences believed is extremely detrimental to the mental and physical well-being of patients with chronic illness. Overlooking the validity of these situations continues to perpetuate the stigmatization of mental illness, a lack of attention to women’s health, and is leaving millions suffering with little hope as to how they can recover their selves. COVID-19 has been devastating and Chronic COVID Syndrome continues to be a topic of great stress at how long-term the effects of the pandemic will last, but the increased attention to these aspects of the medical field can lead to significant medical progress. The “Long-Haulers” of Chronic COVID Syndrome are succeeding in bringing attention to the invisible, and if the momentum can carry over to other chronic illnesses, patients may finally feel like their experiences are visible and are actually being seen.
References
[1] O’Rourke, M., Max, D., & Levy, A. (2013, August 9). What's wrong with me? Retrieved April 03, 2021, from https://www.newyorker.com/magazine/2013/08/26/whats-wrong-with-me
[2] Gold, S. S. (2020, March 5). Millions of women are living with "Invisible ILLNESSES": Here's what that means. Retrieved April 03, 2021, from https://www.health.com/condition/autoimmune-disease/invisible-illness
[3] Living with chronic illness. (n.d.). Retrieved April 03, 2021, from https://my.clevelandclinic.org/health/articles/4062-chronic-illness
[4] Gaslighting in women's health: No it's not just in your head. (n.d.). Retrieved April 03, 2021, from https://www.northwell.edu/katz-institute-for-womens-health/articles/gaslighting-in-womens-health
[5] Overlooked or misdiagnosed conditions in women. (2015, February 11). Retrieved April 04, 2021, from https://womenshealth.obgyn.msu.edu/blog/overlooked-or-misdiagnosed-conditions-women
[6] Collins, F. S. (2021, February 23). NIH launches new initiative to STUDY "Long COVID". Retrieved April 04, 2021, from https://www.nih.gov/about-nih/who-we-are/nih-director/statements/nih-launches-new-initiative-study-long-covid
[7] Mayo Clinic Staff. (2020, November 17). Covid-19 (coronavirus): Long-term effects. Retrieved April 03, 2021, from
[8] Callard, F., & Perego, E. (2020, October 07). How and why patients made Long Covid. Retrieved April 03, 2021, from https://www.sciencedirect.com/science/article/pii/S0277953620306456?via%3Dihub
[9] Jackson, G., (2021, March 09). Covid long-haulers are often Women. maybe it'll change the system's perspective on our pain. Retrieved April 03, 2021, from https://www.nbcnews.com/think/opinion/covid-long-haulers-are-often-women-maybe-it-ll-change-ncna1259686
[10] Davido, B., Seang, S., Tubiana, R., & De Truchis, P. (2020, July 22). Post–COVID-19 chronic symptoms: A postinfectious entity? Retrieved April 03, 2021, from