“Many patients don't feel like they've been heard until they've seen us,” said Dr. Enfield. “If they have been able to see a primary care doctor, often that primary care doctor has only 15 to 20 minutes to talk with them. And it's hard in that 15 to 20 minutes to get to the heart of some of these issues.”
The impact of long COVID-19 symptoms extends well beyond the physical. The uncertainty of the disease and its treatment creates an even more challenging situation for patients struggling with lasting effects.
“The majority of the patients we see were leading extremely busy, active lives prior to their infection,” Dr. Possick said. “Many struggle with guilt that they have let down loved ones or colleagues because of the way they’ve had to modify their lives to manage symptoms. They are frustrated that there are so many unanswered questions—why this happens, how long it will last, how to fix it.”
Advocating for the individual
Preexisting disparities in the health system exacerbate the challenges in diagnosing long COVID, creating even more significant gaps for those who traditionally struggle to access care or feel heard by clinicians—particularly when their symptoms are not clearly identifiable or well understood.
“We found that our patients were facing discrimination,” Dr. Possick said. “Apart from patients with end-organ damage, like post-COVID ILD or myocarditis for example, most patients have largely normal objective testing. Patients, particularly women and people of color, were having their symptoms dismissed by physicians, employers, and family.”
But understanding the actual effect of symptoms on patients’ lives enables clinicians to better mitigate some of these harmful effects by allowing them to advocate on behalf of individuals who may need assistance with keeping a job, managing the process of going on long-term disability, or coordinating specialist care, said Dr. Enfield.