Understanding Long COVID: Navigating the Journey to Recovery

What Is Long COVID?

Doctors and researchers are still working to answer this question. Long COVID is a complicated condition that looks very different from person to person (House of Representatives Standing Committee on Health, Aged Care and Sport, 2023; Zheng et al., 2024). When a condition is this complex, it can be difficult to diagnose. However, just because it is difficult to measure and diagnose does not mean it does not exist. Scholars (Baimukhamedov, 2023; Morello et al., 2023) currently define long COVID as follows:

Though it is difficult to diagnose, long COVID is a common condition—impacting an estimated 19 million adults in the United (Robertson et al., 2022).

Some common symptoms of long COVID include (Raveendran et al., 2021):

• Fatigue and weakness.
• Brain fog, memory, and concentration issues.
• Respiratory issues (e.g., lingering cough, breathlessness).
• Cardiovascular issues (e.g., chest pain, heart palpitations).
• Skin issues (e.g., rash).
• Hair loss.
• Gastrointestinal issues (e.g., nausea, diarrhea).

Individuals with long COVID can experience any one of these symptoms and often experience multiple symptoms at the same time. Individuals who are older, female, and have other preexisting health conditions are more likely to be impacted by long COVID (Song & Giuriato, 2023). For some, the symptoms of long COVID are debilitating, preventing individuals from engaging in the activities they enjoyed before developing long COVID (López-López et al., 2023; Rodríguez-Pérez et al., 2022).

Navigating a Long COVID Diagnosis

Challenges

Whether you are facing long COVID yourself or supporting a family member, friend, or coworker through long COVID, it can be a difficult journey. Beyond the physical symptoms described above, some of the common challenges include:

• Time: Before someone can get a long COVID diagnosis, doctors must first rule out other possible causes of the symptoms. This can be a long and sometimes expensive process requiring many doctor visits. One study found that it took an average of 250 days from first getting COVID-19 to getting a long COVID diagnosis (Song & Giuriato, 2023). Unfortunately, it may take even longer to create a plan that can effectively manage the symptoms of long COVID (e.g., medication and lifestyle changes).
• Feeling dismissed: Because long COVID is difficult to diagnose and can look different from person to person, it can feel invalidating for someone to know they are sick when doctors or other people in their life do not recognize or acknowledge long COVID’s impact on them and their quality of life (Tan & Koh, 2023).
• Discouragement: The physical stressors of long COVID are often accompanied by mental and emotional difficulties. COVID and long COVID can increase emotional distress and mental health concerns, such as depression and anxiety (Zheng et al., 2024).

Living Well With Long COVID

While there are many challenges that come with a long COVID diagnosis, there are a few things that can help.

• Become an educated healthcare consumer: When working with doctors and other healthcare professionals, learn how to advocate for yourself or those you support to help improve your experience and the care you receive. Go to appointments prepared with specific questions to ask, be persistent when you are not being heard, and be willing to seek alternate providers when needed to increase your chances of obtaining adequate care that meets your needs (Baz et al., 2023).
• Build skills that support mental health: Chronic health conditions such as long COVID can have major impacts on your daily life, leading to feelings of hopelessness and a lack of control. Focus on building skills that support your well-being even while experiencing difficulties to help you maintain your quality of life. For example, a variety of coping strategies can help people experiencing chronic health conditions. These may include:
• • Learn to accept your experience, including the hard parts. This can make a big difference. When we fight against difficult experiences, we often create new challenges. By accepting all experiences, we can spend more energy on the things that matter to us (see the related USU Extension fact sheet Skills to Support Mental Health in Uncertain Times, Part 1: Being Open).
  • Practice mindfulness techniques, such as meditation, deep breathing exercises, or yoga. This can help reduce stress and promote awareness. Awareness can help you cope by connecting you to the present moment and your inner self (see Skills to Support Mental Health in Uncertain Times, Part 2: Cultivating Awareness).
  • Focus on what matters most to you. When we are going through difficult experiences such as chronic health conditions, it’s easy to focus on the difficulties instead of the things that matter to us. When we focus on engaging in activities that are important to us, such as connecting with friends or being outdoors, this can protect and improve our mental health and well-being (see Skills to Support Mental Health in Uncertain Times, Part 3: Being Engaged).

Conclusion

Long COVID is a complex condition that requires patience and compassion. By implementing coping strategies, seeking medical guidance, and connecting with support networks, individuals with long COVID can move forward on the path to recovery and improved well-being.

References

• Baimukhamedov C. (2023). How long is long COVID? International Journal of Rheumatic Diseases, 26(2), 190–192.
  https://doi.org/10.1111/1756-185X.14494
• Baz, S. A., Fang, C., Carpentieri, J. D., & Sheard, L. (2023). 'I don't know what to do or where to go.' Experiences of accessing healthcare support from the perspectives of people living with long Covid and healthcare professionals: A qualitative study in Bradford, UK. Health Expectations, 26(1), 542–554.
• House of Representatives Standing Committee on Health, Aged Care and Sport. (2023). Long and repeated COVID-19 lockdowns: Inquiry into the health, social and economic impacts. Australian Parliament House.
  https://www.aph.gov.au/Parliamentary_Business/Committees/House/Health_Aged_Care_and_Sport/LongandrepeatedCOVID/Report
• López-López, L., Calvache-Mateo, A., Ortiz-Rubio, A., Granados-Santiago, M., Heredia-Ciuró, A., Martín-Núñez, J., & Valenza, M. C. (2023). Differences of disabling symptoms between previously hospitalized or non-hospitalized currently working long-COVID survivors one year after infection: A descriptive study. Healthcare 11(16), 2306.
• Morello, R., Martino, L., & Buonsenso, D. (2023). Diagnosis and management of post-COVID (long COVID) in children: A moving target. Current Opinion in Pediatrics, 35(2), 184–192.
  https://doi.org/10.1097/MOP.0000000000001221
• Raveendran, A. V., Jayadevan, R., & Sashidharan, S. (2021). Long COVID: An overview. Diabetes & Metabolic Syndrome: Clinical Research & Reviews, 15(3), 869–875.
• Robertson, M. M., Qasmieh, S. A., Kulkarni, S. G., Teasdale, C. A., Jones, H. E., McNairy, M., Borrell, L. N., & Nash, D. (2022). The epidemiology of long COVID in US adults. Clinical Infectious Diseases, 76(9), 1636–1645.
  https://doi.org/10.1093/cid/ciac961
• Rodríguez-Pérez, M. P., Sánchez-Herrera-Baeza, P., Rodríguez-Ledo, P., Serrada-Tejeda, S., García-Bravo, C., & Pérez-de-Heredia-Torres, M. (2022). Headaches and dizziness as disabling, persistent symptoms in patients with long COVID–a national multicentre study. Journal of Clinical Medicine, 11(19), 5904.
• Song, Z., & Giuriato, M. (2023). Demographic and clinical factors associated with long COVID. Health Affairs, 42(3), 433–6,442A–442O. https://doi.org/10.1377/hlthaff.2022.00991
• Tan, K. W. A., & Koh, D. (2023). Long COVID-Challenges in diagnosis and managing return-to-work. Journal of Occupational Health, 65(1), e12401.
• Thompson, C. M., Babu, S., Gerlikovski, E., McGuire, M., Makos, S., Ranallo, A., & Robieson, I. (2023). Living with long COVID: A longitudinal interview study of individuals' communicative resilience through the "long haul." Health Communication, 1–17.
• Zheng, X., Qian, M., Ye, X., Zhang, M., Zhan, C., Li, H., & Luo, T. (2024). Implications for long COVID: A systematic review and meta‐aggregation of experience of patients diagnosed with COVID‐19. Journal of Clinical Nursing, 33(1), 40–57.

October 2024
Utah State University Extension
Peer-reviewed fact sheet

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Authors

Heather Kelley, Rachel Byers, Ty Aller, and Tim Keady

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