Approaching the Two Year Mark Living with Long Covid

Grace first contracted COVID-19 in October of 2020, having a fairly serious infection that almost required hospitalization. She caught COVID again just a month later, likely from a visit to the hospital. These back to back infections seemed to trigger an avalanche of health issues. Throughout 2021 she would be diagnosed with illness after illness including adenomyosis, developmental coordination disorder (dyspraxia), fibromyalgia, non-epileptic seizures and eventually functional neurological disorder (FND). She would also continue to experience lingering COVID symptoms, most notably chest pain and difficulty breathing. While this was originally classified as post viral illness, when her condition did not improve she was slowly transitioned into being diagnosed with long COVID.

In this episode of the Major Pain podcast, Grace discusses her difficult adjustment into a life of chronic illness triggered by her COVID infections. Her doctors believe that many of her current conditions have been present all along, but were invisible until COVID caused them to flare. Since her situation has become so complicated, many doctors are unwilling to take any action in fear of making the situation worse. This has proven to be one of the most difficult aspects of her medical journey, repeatedly facing denial of her requests for help. Grace describes her initial resistance to purchasing her first cane, recognizing she needed mobility support. However, seeing how much help a mobility aid could provide, becoming an ambulatory wheelchair user proved an easier transition. Grace is focusing on filling her days with as much joy and positivity as possible, while continuing to face an uphill battle fighting for doctors to even try to help. Almost two years in she is dismayed to have no resolution or solution in sight, but continues to push for help and search for potential new avenues of care.

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