The right to be believed

The following blog post is reproduced with permission from Long Covid SOS, a UK based Long Covid support and advocacy charity.

As the world grapples with the ongoing COVID-19 pandemic, the persistent struggle with Long Covid highlights the crucial need for recognition, support, and empathy. Despite its widespread impact, Long Covid remains poorly understood and often overlooked, both in medical and public spheres.

 The sentiment expressed in the first principle of the  Long Covid SOS Bill of Rights, “The Right to be Believed,” resonates deeply with the challenges faced by people with Long Covid. Just as this Bill of Rights emphasises the importance of trust and respect from governing bodies, the Long Covid community advocates for acknowledgment and validation of their experiences. This principle underscores the dignity and inherent worth of every individual affected by Long Covid.

 Believing people living with Long Covid is the initial step towards providing meaningful support. Many people living with Long Covid report feeling dismissed or misunderstood by their peers, healthcare professionals, and policymakers, exacerbating their sense of isolation and hindering their access to appropriate care. Validating their experiences and symptoms is essential for fostering a supportive community and facilitating an effective healthcare response.

 Recognising the experiences of those with Long Covid is critical for providing the necessary help and support. Many feel ignored or misunderstood, leading to increased isolation and difficulty accessing appropriate care and support. Additionally, there is a growing need to share the stories of Long Covid patients in a manner that accurately reflects their experiences. Many struggle to articulate their symptoms, leading to confusion with healthcare providers and doubt from their social circles.

 

Research is fundamental for understanding Long Covid and developing effective treatments and support systems. Investing in Long Covid research is crucial for uncovering its causes, identifying potential therapies, and improving patient outcomes. This research not only benefits current sufferers but also informs future pandemic management and understanding of post-viral conditions.

 Acknowledging Long Covid at institutional and governmental levels is essential for allocating resources, shaping policies, and ensuring access to necessary support for those affected. This includes implementing specific strategies within healthcare systems, providing financial aid for sufferers, and implementing preventive measures such as air filtration to reduce virus transmission and enhance coexistence with COVID-19.

 Reflecting on International Long Covid Awareness Day, which took place on March 15th, serves as a reminder to recognise, assist, and advocate for those facing Long Covid. This event underscores the importance of continued efforts in research and policy reforms that can significantly improve the lives of people affected by Long Covid.

 Creating an environment where patients feel believed and supported can help reduce the stigma and isolation often experienced by those living with Long Covid. Addressing the challenges of Long Covid reflects a dedication to healthcare, showcasing empathy and resilience in navigating a condition that profoundly alters lives.