My Long-Covid Journey
Over two years into the Covid-19 pandemic, we now know that 20–25 percent of Covid-19 survivors develop Long-Covid, a condition characterized by symptoms that continue at least four weeks after infection.¹ However, when I contracted the virus in 2020, this term did not yet exist.
I was an active 23-year-old in my first week of graduate school at the time. I had seen many close to me recover from Covid-19 as I spent the first portion of the pandemic in Seattle, WA, one of the earliest Covid-19 epicenters. I assumed my experience would mirror theirs. Yet months after my initial infection, I continued to experience severe dizziness, shortness of breath, fainting, elevated heart rates, migraines, nausea, and other symptoms. In time, my illness would be named “Long-Covid”, and I would become part of a community known as “Long-Haulers.”
Long-Covid diagnosis- A lengthy process
I was first seen at the Vanderbilt Autonomic Dysfunction Center² and diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS)³, a condition characterized by an abnormal increase in one’s heart rate upon standing and symptoms such as light headedness, fatigue, and changing blood pressure. Research now shows that POTS can be a complication of Covid-19.⁴
Reaching diagnoses for the remainder of my symptoms took two years and required over ten medical specialists. I have now been diagnosed with six new conditions and continue to experience a range of often limiting symptoms. While there are many approaches Long-Haulers can take in recovery, I found a few strategies to be particularly helpful:
1. Establish care with a primary care physician.
The first step I took was to establish care with a primary care physician. This allowed me to have check-ins with a consistent provider, message her with questions, and get referrals for various specialists. When selecting a primary care physician, Long-Haulers should consider asking about how familiar they are with treating Long-Haulers.
2. Seek care from Long-Covid Clinics.
I also benefited from visiting a Long-Covid clinic that specialized in assessment and treatment of Long-Haulers. Over 60 of these clinics opened since the start of the pandemic and are staffed with doctors trained specifically in Long-Covid care. However, health inequities prevent many from receiving such specialized treatment. Clinics that offer low or no-cost care to patients without insurance can be found here, though the need for accessible resources continues to increase.
3. Advocate for diagnostic testing and treatment options.
Since so little is known about Long-Covid, advocating for myself has been essential in my recovery. In urging my doctors for additional testing and treatments, I have often experienced more progress in my care. Bringing a loved one as additional support has also helped in these efforts. Advocating for myself was particularly important before Long-Covid was recognized as an official diagnosis; something that rings true for many other Long-Haulers. Because this condition is still poorly understood and often unrecognized, advocacy remains important for many patients. Fortunately, researchers are working hard to increase understanding around the condition.
4. Participate in research.
There are many online resources that can help individuals — both Long-Haulers and non-Long-Haulers alike — find clinical trials to join. One resource, ResearchMatch, is an online platform that helps connect people interested in research opportunities with researchers across the U.S. recruiting for studies. Anyone living in the U.S. can register online with ResearchMatch to receive messages about research studies and a customized list of studies matching their health condition, age, sex, and willingness to travel. ResearchMatch volunteers can now include “Long-Covid” as a health condition in their profile. Long-Covid support pages also share information on clinical trial opportunities which is how I learned of and enrolled in my first Long-Covid trial. This study is at the Mayo Clinic and is assessing the efficacy of breathing devices to reduce shortness of breath in Long-Haulers.
5. Seek support from employers.
Six weeks after beginning graduate school, I withdrew due to the severity of my illness. Six months later, I started work at Vanderbilt University Medical Center where I now enjoy my work advancing and supporting health research. I worked with my Human Resources department and medical team to implement accommodations allowing me to spread out my hours as needed to allow for breaks. Similar or additional accommodations may be available at the workplaces of other Long-Haulers. For some, Long-Covid may be considered a disability under Titles II (state and local government) and III (public accommodations) of the Americans with Disabilities Act (ADA) for Long-Haulers.⁵
6. Receive support and find solace in others.
Since becoming sick with Long-Covid, I have relied heavily on friends and family. Accepting help when needed with basic tasks that were once easy, like running errands or grocery shopping, has been an important step in honoring my new capacities. Moreover, my community’s presence has helped sustain me the last two years as I have adjusted to life with a chronic illness. I have also found great solace in the similar experiences of other Long-Haulers shared on Long-Covid support pages⁶. The comfort of shared grief has reduced the isolation I have often felt with Long-Covid.
While my prognosis as a Long-Hauler is unknown, I remain hopeful for improvement of my symptoms. In time, I would love to go back to the nurse practitioner program I started at Vanderbilt. Until then, however, I am committed to finding ways to flourish where I am now while helping increase Long-Covid awareness along the way.
References & Resources:
- Bull-Otterson L. Post–COVID Conditions Among Adult COVID-19 Survivors Aged 18–64 and ≥65 Years — United States, March 2020–November 2021. MMWR Morb Mortal Wkly Rep [Internet]. 2022 [cited 2022 Jun 8];71. Available from: https://www.cdc.gov/mmwr/volumes/71/wr/mm7121e1.htm
- Autonomic Dysfunction Center [Internet]. [cited 2022 Aug 30]. Available from: https://www.vumc.org/autonomic-dysfunction-center/vanderbilt-autonomic-dysfunction
- Postural Tachycardia Syndrome (POTS) | Vanderbilt Autonomic Dysfunction Center [Internet]. [cited 2022 Aug 30]. Available from: https://www.vumc.org/autonomic-dysfunction-center/pots
- Jamal SM, Landers DB, Hollenberg SM, Turi ZG, Glotzer TV, Tancredi J, Parrillo JE. Prospective Evaluation of Autonomic Dysfunction in Post-Acute Sequela of COVID-19. J Am Coll Cardiol. American College of Cardiology Foundation; 2022 Jun 14;79(23):2325–2330. Available from: https://pubmed.ncbi.nlm.nih.gov/35381331/
- Guidance on “Long COVID” as a Disability Under the ADA, Section | HHS.gov [Internet]. [cited 2022 Jul 8]. Available from: https://www.hhs.gov/civil-rights/for-providers/civil-rights-covid19/guidance-long-covid-disability/index.html
- COVID-19 Long Haulers Support | Facebook [Internet]. [cited 2022 Aug 30].https://www.facebook.com/groups/www.facebook.comgroups373920943948661covidcaregrou/?ref=share
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