Understanding and Addressing the Stigma of Pediatric Long COVID

"It feels like no one believes I'm still sick." Mary, age 14

As the COVID-19 pandemic has unfolded, the spotlight has primarily been on mild, short-term cases or severe, life-threatening forms of the disease. However, Long COVID, particularly in children, has remained largely under the radar. Pediatric Long COVID involves lingering symptoms that can severely impact a child’s daily life, which we see first-hand in our work with Long COVID Families.

The condition is surrounded by a lack of awareness that contributes to pervasive stigma, making it difficult for affected children to receive the support they need. Understanding what Long COVID is, why this stigma exists, and how we can help remove it is crucial for supporting affected children and their families.

Understanding Pediatric Long COVID

Long COVID describes the lasting effects of a COVID-19 infection, and it can affect any child, regardless of the severity of their initial infection. The most common symptoms experienced by children with Long COVID include fatigue, headaches, muscle and joint pain, and trouble concentrating or focusing, which can significantly impact daily activities, such as playing or attending school.

Beyond these common symptoms across ages, some symptoms vary by age group, highlighting important areas for research and greater understanding.

The Stigma Faced by Children with Long COVID

“People think I’m just pretending to get out of school.” - Jacob, age 12, summing up a big problem many kids with Long COVID face.

The stigma around pediatric Long COVID can result in patients feeling misunderstood, forcing them to navigate social and emotional fallout in addition to physical symptoms.

The stigma surrounding pediatric Long COVID can come in many forms, one of which being misdiagnosis. In our work with Long COVID families, we often here that parents frequently encounter unwarranted skepticism about their child's symptoms, with children’s symptoms often being mistaken for anxiety or dismissed as exaggerated. This dismissive attitude can lead to further distress, exacerbation of symptoms, invasive inquiries, and emotional strain for families already grappling with a significant health challenge.

Children living with Long COVID may also face educational challenges due to ongoing symptoms like fatigue and cognitive impairments. However, the lack of understanding and acceptance by school authorities often leads to insufficient accommodations and support.

Understanding the Origins of the Stigma

"Everyone assumes kids bounce back quickly, but that's not always true," says Sarah, a parent of a child with Long COVID.

Sarah’s candidness highlights the significant stigma surrounding pediatric Long COVID. During the early stages of the COVID-19 pandemic, public health messages often emphasized that children were less affected by COVID-19. While this was based on initial perceptions of risk, it has since been disproven. But the narrative has endured, creating challenges in acknowledging that children can experience lasting effects of the virus.

Other factors contributing to the stigma are perceptions of childhood illness and lack of research and understanding. Children are perceived to be more resilient and less susceptible to severe illness compared to adults. Early research on Long COVID primarily focused on adults, and early pediatric studies often used adult symptoms as a template for children. Without sufficient data and awareness, both the medical community and the public may be skeptical about the condition’s legitimacy. Robust pediatric research is only now being published, helping to fill this critical knowledge gap.

How Stigma Affects Families

"It's hard when others don't take your child's illness seriously. It feels like we're constantly fighting for understanding," says Emily, a parent of a Long COVID child.

This struggle highlights the profound impact of the stigma surrounding pediatric Long COVID. Families face significant challenges, not only from the illness itself but also from societal misconceptions. Beyond these misconceptions, the stigma surrounding pediatric Long COVID has significant consequence, including delayed diagnosis and treatment, educational challenges, and emotional and psychological strain.

Strategies to Combat the Stigma

“Children with Long COVID, like adults, are suffering from medical and social stigma due to their condition, including neglect of their disease itself. It encourages parents and children to hide the condition because they are not heard. We need more awareness, empathy, and ultimately establish self-advocacy to combat Long COVID stigma,” says Nandini, parent of a child with Long COVID and Long COVID Families Board Member.

To combat the stigma of pediatric Long COVID, we need to take several steps:

Raise awareness: Educating the public, healthcare providers, and educators about pediatric Long COVID is crucial. This includes sharing real-life stories, research findings, and expert insights to build a comprehensive understanding of the condition.

Promote research: Increasing funding and support for research focused on pediatric Long COVID is essential to fill knowledge gaps and provide evidence-based guidance for treatment and care. Kids are not just small adults; their immune systems, bodies, and brains are rapidly developing. As a result, Long COVID presents differently in kids and urgently needs to be understood.

Advocate for support: The medical community, researchers, educators, families and advocates must work together to push for policies and programs that support children with Long COVID. This includes ensuring access to medical care, educational accommodations, and mental health resources.

Foster compassion and understanding: Creating a culture of empathy and support can help reduce the stigma. Encouraging open conversations and listening to the experiences of affected families can foster a more inclusive and supportive environment.

Pediatric Long COVID is a serious condition that requires greater recognition and understanding. By addressing the stigma and advocating for better support and research, we can improve the lives of children affected by Long COVID and their families. Let’s work together to ensure that every child receives the care and compassion they deserve.

For more information on pediatric Long COVID and how you can help, visit www.longCovidfamilies.org