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    Clarion Call About Long COVID

    According to the U.S. Government Accountability Office, Long COVID potentially affects between 7.7 and 23 million Americans. I am one of those millions. On December 3, 2020, I was diagnosed with COVID19. In February 2021, some of my COVID19 symptoms rebounded and I was subsequently diagnosed with what is now called Long COVID. By the beginning of August 2021, my health had further deteriorated. I finally acknowledged that I would not recover from Long COVID unless I took time off work. So I relented and took short term disability leave.

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    The New England Journal of Medicine called Long COVID America’s next national health disaster. According to the Brookings Institute roughly 16 million Americans of working age have Long COVID. Of that number 2 to 4 million cannot work due to this often debilitating condition. This has resulted in lost wages of approximately $170 billion dollars leaving long-haulers and those depending upon us in financial peril. I am extremely concerned about our capacity to manage and support those living with Long COVID. So I am issuing a clarion call for a community wide reckoning. That reckoning starts with understanding what Long COVID is.

    Long COVID is a group of new or returning COVID19 symptoms that can last months and sometimes years. Nearly all long-haulers suffer from extreme fatigue. Long COVID can cause multisystem organ damage affecting the heart, kidneys, skin, respiratory system, and brain even in people with no prior history of such damage. Some people with Long COVID develop dangerous blood clots. Others are struggling with other serious conditions such as Myalgic Encephalomyelitis/Chronic Fatigue Syndrome also known as ME/CFS, strokes, and Postural Orthostatic Tachycardia Syndrome commonly known as POTS. Some female long-haulers experience changes in their menstrual cycle.

    My own Long COVID symptoms include cognitive impairment also known as brain fog, extreme fatigue, difficulty breathing, neurologic dysfunction, and inflammation throughout my body. I also suffer from Post-Exertional Malaise also known as PEM. This means that I am easily overexerted. Eighteen months in I continue to be crushed by fatigue, struggle cognitively, still cannot taste or smell, and have PEM. Long COVID has completely upended my life. I rarely leave home and must closely pace myself to avoid overexertion. Everyday is a balancing act. I must carefully allocate my limited energy. Sometimes I must decide if I am going to cook dinner, shower, or do laundry. On the days that I have pulmonary maintenance, I cannot cook or take a shower. Pushing myself to do more results in overexertion. In June 2022, I pushed too hard. I have been mostly bedridden since then. Long COVID has kicked my tale for the last 547 days with no signs of stopping.

    My own recovery is slow and often lonely. I have endured painful setbacks. There are still dark days when my death seems imminent. Despite these obstacles, I was determined to return to work. After one year on short term disability leave, I was forced to acknowledge that I could no longer perform my job due to Long COVID. Because I could not return to work full-time, state law mandated my involuntary separation due to disability.

    The one consistent bright spot is the outstanding medical care that I receive as a patient in the Post COVID Recovery Program at The Ohio State University Wexner Medical Center. Fortunately I was an early patient in the program. It is the only such program in Columbus. All Long COVID patients are not as fortunate. They are navigating scary symptoms within systems that, though well-intentioned, do not have the capacity to help them.

    The news is not all bad. Recently the Biden Administration created an office specifically focused on Long COVID. The office is part of the US Department of Health and Human Services. The function and goals of this office are detailed in the two reports released by the administration. Links to these reports can be found below. Additionally, in July 2022 the US Department of Labor initiated a virtual dialog with and solicited ideas from the public on how to support workers with Long COVID in the workplace. The comment period has ended.

    Long COVID is no respecter of persons. It affects millions of Americans regardless of race, gender, age, socioeconomic status, or geography. Long COVID has compromised my health, quality of life, and economic security. It destroys careers and has forced sufferers to quit or retire early. We need to develop a comprehensive plan to address Long COVID. So I am issuing a clarion call. Whether directly or indirectly, Long COVID impacts all of us.

    I invite the Columbus community to a virtual big table. We have work to do.

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    Stephanie Mitchell Hughes
    Stephanie Mitchell Hugheshttp://stephaniemitchellhughes.com
    Stephanie Mitchell Hughes is an attorney and Interim Assistant Director of NAMI Franklin County. She writes, speaks, and presents workshops on living with depression, resilience, and workplace wellness. Stephanie shared her journey through life’s hard places at TedxColumbus. She currently serves on the board for the Lawyers Depression Project.
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