Many people who became sick with COVID-19 are experiencing long-term health impacts from the infection and subsequent complications. These may include chronic pain and fatigue; difficulty with daily activities, including work and school; and loss of sleep or appetite. These symptoms are known as Long Covid. They can be difficult to treat or manage and can have a significant impact on a person’s quality of life.
Some patients are at greater risk for developing Long Covid, particularly those from racial or ethnic minority groups or people with disabilities. This can be a result of their preexisting health conditions, where they live or go to school, or due to barriers in accessing care.
Those struggling with Long Covid are looking for ways to cope and find support in the community. They also want to know how to best approach their healthcare providers for assistance in managing their symptoms. This is why many are turning to online peer support groups, a community of people sharing their experiences and providing each other with advice. However, little is known about how these communities have helped those who are living with this new health challenge.
While research is underway to understand why some people develop Long Covid, there are ways to help. For example, tracking and charting symptoms can help you identify what’s causing them and communicate that to your provider. Another way to help is by finding a doctor who is willing to be a partner in your medical care and listen to your needs. This can be a challenging search, but it’s worth it.
The UBMD Long COVID Recovery Center is one such clinic. It provides education, future research opportunities and mental health support for those in the Western New York community impacted by the pandemic. The clinic also can help individuals navigate resources and reasonable accommodations at work or school to mitigate the effects of their Long Covid symptoms.
Those who seek out long COVID support group have reported that these spaces offer many benefits. They’ve filled health care gaps, allowed for condition validation, and provided a sense of solidarity against the medical field, as has been seen with groups that focus on fibromyalgia [15].
However, these same participants reported feeling negatively impacted by comparisons to others in long COVID groups. This reflects the social comparison theory of Festinger, where people compare themselves to those they think are “like” them. This was also noted by Mazanderani et al in their study of COVID-19 peer support groups.
Those struggling with the symptoms of Long COVID should also consider applying for disability as soon as they are able. It may take six to twelve months to be approved, but the earlier you start the process, the more likely it is that you will receive the assistance you need to remain in your home and participate in your community. Additionally, the Office of Civil Rights has released guidance explaining that some individuals who have severe symptoms from COVID-19 or Long COVID can qualify for protection against discrimination under various civil rights laws.