How Connection and Social Support Help Those Suffering From Long COVID

With COVID-19 vaccination numbers growing daily and COVID-19 restrictions slowly being lifted, many may see the pandemic as nearing its end. However, for those suffering from long-term effects of COVID-19, the end seems nowhere in sight. The symptoms some people are experiencing for weeks or months after recovering from the disease is a syndrome called long COVID. Researchers estimate 10% to 30% of people who contract COVID-19 develop long COVID, with more women reporting lasting symptoms. 

Those suffering from long COVID experience ongoing combinations of symptoms. The most common are 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 health impacts of prolonged symptoms, which include depression, anxiety, changes to their mood and sleep, and a mental “brain fog” that will not lift. However, people suffering with long COVID can have up to 200 different symptoms.  

People with long COVID can be old, young, healthy, or those with chronic conditions. Although they rarely require hospitalization, their persistent symptoms have a major impact on their daily lives, livelihood and, of course, health. A recent study of more than 3700 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 and on an unpredictable journey.  

What People in the Health Care Industry Should Know  

There are few objective findings in patients with long COVID. As a result, an unfortunate reality for many patients is feeling dismissed by their care providers. CaringBridge conducted a long COVID survey to help shed light on the needs of people suffering with this condition. Participants were those who believe they have or have had long COVID.  Respondents most common response to “What is the most important thing people should know about the long COVID experience?”  was “It’s real.” The survey also found that those who suffer or suffered from long COVID feel that acknowledgement of their symptoms is the form of support that helps the most. Furthermore, respondents who are not receiving medical treatment report they do not know who to go to or that their doctor has not been able to help.  

These survey results indicate that patients with long COVID want to be validated and understood by their care providers. Helping them find credible health information and access expert care is a source of reassurance and hope. For patients with debilitating symptoms, referral to a long COVID specialty clinic is warranted.  

Suffering from ongoing symptoms of COVID-19, like any other health journey, can be difficult to endure alone. Therefore, encouraging patients to engage with a social support network is a critical factor in the path to healing. 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.  Additional research has shown listening to other people’s stories and sharing one’s own story can improve both mental and physical health by creating empathic connections. Those with long COVID report a sense of isolation which suggests that social support and connection is particularly important for this group. 

How CaringBridge is Helping Those With Long COVID Cope and Heal 

Connection to information and support is a critical factor in the journey to healing for people who have long COVID. CaringBridge, a global nonprofit social network, has designed a Long Covid Support Center to connect and help those suffering from long COVID.  

There are many resources to read online, however having support from others and a sense of community are also very important. CaringBridge’s Long COVID Support Center helps keep people up to date with the latest medical research studies, links to support groups, information on finding and accessing long COVID specialty clinics, a survey about experiences with long COVID, articles with advice and inspiration and opportunities to connect with other CaringBridge users experiencing ongoing COVID-19 symptoms. Also, CaringBridge is providing the opportunity for patients with long COVID and/or their family caregivers to create their own free CaringBridge site to share their journey and ask for needed help.

Connecting with others in a virtual community is an important way for people with long COVID to stay abreast of new health information and a way to get emotional support as they navigate their health journey. In the presence of the unknown of long COVID, love and support can be a healthy lifeline.

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