Social support & healing for those suffering from long COVID: A Q&A with CaringBridge

With COVID-19 vaccination numbers growing daily and COVID-19 restrictions starting to be lifted, many 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 after recovering from the disease.

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.

Team Tunheim is working with CaringBridge, a global nonprofit social network dedicated to helping family and friends communicate with and support loved ones during a health journey, to raise awareness about their new virtual support center connecting and supporting those suffering from long COVID.

Recently, we interviewed the CaringBridge team to discuss their new virtual support center, the importance of social support and sharing health journeys in healing, especially for those experiencing long COVID.

CaringBridge has the vision of a world where no one goes through a health journey alone. And social support, gained through an online site like CaringBridge, is one of the most important factors to healing and achieving positive health outcomes.

The pandemic has already separated families and friends and limited social interactions. When you layer on a complex health journey like long COVID, it’s a recipe for disaster if people don’t seek out their support network for care and connection. Science indicates that meaningful relationships and connections matter, especially during a health journey. People need to know they matter. It’s healing.

CaringBridge users have found over the years that in the presence of the unknown, love and support can be a lifeline. As long COVID patients work with their doctors—who often are still learning more about the syndrome—the support of community is so important.

Science indicates that meaningful relationships and connections matter, especially during a health journey. Families used CaringBridge like never before in 2020, and still today, when patients are isolated with COVID, friends and family are desperate for news. Providing meaningful social support and connection throughout a health journey is the soul of CaringBridge.

But as we’ve seen since 1997, over hundreds of thousands of health journeys, the need for connection and community remains, long after a crisis phase. After stroke, serious injury, premature birth—and now long COVID—it can be a longer road toward wholeness. And no one should have to travel that road alone.

Additionally, through CaringBridge.org/covid, CaringBridge has a created an online resource for people impacted by long COVID, including a survey, resources and stories of others who have experienced the syndrome.

If you suspect your symptoms may be long COVID, see your physician right away to rule out other issues and assess treatment.

Since most physicians don’t have experience with long COVID, consider getting care at a long-COVID specialty clinic to help assure you are getting the best treatment.

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. Visit CaringBridge.org/covid to learn more.

If you believe you have or had long COVID, please take CaringBridge’s long COVID survey to help shed light on this syndrome.