Episode 19 - Long COVID Awareness Day: Five People, Five Stories

In this episode of the COVID Longhaulers Podcast, Jessie and Emerson sit down with five guests to discuss what their daily lives look like with Long COVID – across different ages, life stages, and circumstances.Aliza has been living with Long COVID since she was 12. Despite severe fatigue and POTS, she continues attending high school with accommodations while navigating the loss of activities she once loved and the social challenges of growing up with a chronic illness [00:01:19].Libby is a university professor living with dysautonomia and neurological symptoms. Through strict pacing and careful planning, she continues working full time while redefining what joy and rest look like in her life [00:15:23].Eddie spends most of their days conserving energy while managing severe fatigue and PEM. They are enrolled in an intensive language program, which has negatively affected their baseline and caused rolling PEM and longlasting migraines [00:32:27].Celeste developed Long COVID while pursuing a master’s degree in neuroscience and was forced to leave the program as their health declined. They now live with their parents and share how the illness changed their daily life and the future they had imagined for themselves [00:49:14].Beth has been living with Long COVID since 2020 while raising four children and continuing to work to maintain health insurance. She shares the challenges of parenting with severe illness and the importance of being present even on the hardest days [01:03:14].Millions of people worldwide are living with Long COVID, yet research and support systems remain severely underfunded. Many longhaulers lose their jobs, financial stability, or careers, and disability benefits are often difficult to access or insufficient to live on. As a result, some people are forced to push through work or school even when it worsens their health.Donations to Long COVID research and advocacy organizations help advance urgently needed medical research and improve support for those living with this condition. You can find a list of organisations to support here. We also encourage listeners to support mutual aid and community fundraisers whenever possible, as many longhaulers rely on this support to cover basic needs.A written version of this episode and the full transcript are available on our Substack, along with a glossary to help explain commonly used terms.If you enjoyed this episode, please subscribe so you don’t miss future episodes of the COVID Longhaulers Podcast.You can also join our Discord server to connect with the community, and find all of our other links here. Please note, that the information provided here is not intended to serve as professional medical advice, diagnosis or treatment. If you have health related issues or believe that you are suffering from Long Covid, please contact a qualified health professional to get the personalized assessment, advice and treatment you need. We will not be liable for any direct, indirect or other damages arising from the use of this podcast. The views and opinions expressed by our guests are their own and do not necessarily reflect or represent the views of the podcast hosts or team.