The COVID-19 pandemic has impacted our lives in more ways than we could have imagined, but one unexpected impact is the long-term symptoms some people are experiencing for weeks or months after recovering from the disease, a syndrome called long COVID. Researchers estimate 10% to 30% of people who contract COVID-19 develop long COVID after recovering from the disease, with more women reporting lasting symptoms.
Those suffering from “long COVID” experience ongoing combinations of symptoms such as fatigue, shortness of breath, body aches, coughing, joint pain, chest pain, intermittent fever, difficulty concentrating, headaches and even continued loss of taste and smell. Others also report the mental impacts of prolonged symptoms, which include depression, anxiety, changes to their mood and sleep, and a mental “brain fog” that won’t lift. In all, people suffering with long COVID can have up to 200 different symptoms.
Dr. Archelle Georgiou, an author and expert in consumer healthcare, noted that minimizing symptoms and the people who are experiencing long COVID is another unfortunate stage in this pandemic. Understanding that long COVID is a real syndrome, should be treated by experts, and is not imagined may be a relief for some who are suffering with ongoing effects of the virus.
While the number of infected people who will develop long-lasting symptoms is unclear, what is true is those with long COVID can be old, young, healthy or those with chronic conditions. Although many experiencing prolonged symptoms of COVID-19 do not require hospitalization, the ongoing symptoms still have a major impact on their daily lives, livelihood and, of course, health. A recent study of more than 3,700 people with long COVID in 56 countries found that more than half were not able to work full time because of their ongoing symptoms. With symptoms varying from day to day, individuals can feel isolated — alone on an unpredictable journey.
The pandemic has showed us how truly important connecting and seeking social support from your family and friends is as you go through challenging times. Suffering from ongoing symptoms of COVID-19, like any other health journey, can be difficult to endure alone. Access to information and support is a critical factor in the path to healing for those experiencing long COVID-19. There are many resources to read online, however having support from others and a sense of community are also very important. Among the places that provide resources, CaringBridge understands the importance of helping people connect with family and friends during personal health journeys and has developed a new Long COVID Support Center, to keep people up to date with the latest medical research studies, links to support groups, information on finding and accessing post COVID care centers, and advice and opportunities to connect with other users experiencing ongoing COVID-19 symptoms.
Connecting with other long COVID patients in a virtual community is an important way to stay abreast of new health information and a way to get emotional support as you navigate your health journey. Finding social support and connection is so important considering those who are experiencing long COVID or long-lasting symptoms are reporting a rise in sense of isolation.
“Research has shown listening to other people’s stories can improve both mental and physical health. Sharing your story is empowering and liberating and helps not only yourself but others through creating empathic connections and supportive audiences,” said Dr. Georgiou.
In the presence of the unknown of long COVID, love and support can be a lifeline. According to a study by the Robert Wood Johnson Foundation, social support is by far the most important factor for population health outcomes, with 40% of population health outcomes being determined by social support. The power of meaningful connections is real, and the support of a community is crucial as long COVID patients continue through their health journey.
 Tabacof, L., Tosto-Mancuso, J., Wood, J., Cortes, M., Kontorovich, A., McCarthy, D., Rizk, D., Nasr, L., Breyman, E., Mohammadi, N. and Kellner, C. (2020) *PREPRINT* Postacute COVID-19 syndrome negatively impacts health and wellbeing despite less severe acute infection. medRxiv.