Among Kelly’s network of contacts with long COVID, many cite extreme challenges in pursuing post-COVID care due to incomplete or incorrect documentation. They experience posttraumatic stress from navigating the problematic health care landscape and dehumanizing experiences of having their pain dismissed.
Even now, with an incredible multidisciplinary care team, Kelly quickly notes that managing her care, and ensuring she can present all of the information in a way that will provide results, has become a full-time job. Preparing for appointments can take her from 1 to 2 hours.
“I am getting very skilled at knowing how to present my thoughts and ideas about ‘what might this be’ and asking ‘could we do this test’ without pushing back on someone’s ego in such a way that I’m going to get shut down. Sometimes I lie. I say, ‘My friend, she has her PhD in nursing, and she wants me to ask this question,’ so at least it isn’t coming from me, this stupid patient. And that’s sometimes how I feel.”
Advice and advocacy
After years of navigating the health care environment and extensive research into her condition, Kelly turned her attention to advocating for others with long COVID. Her advocacy includes moderating comments and activities on Facebook for the 60,000-member Long COVID Support Group. She also has written a book in the style of Dr. Seuss that, she hopes, will entertain and educate about the long COVID experience.
Her most important mission, however, is advocating with legislators and medical associations for continuing medical education around COVID-19—and for licensing authorities, health care organizations, and others to hold practicing clinicians accountable to regular updates.
But even as the field catches up with the ever-changing and ever-growing body of research into long COVID, Kelly has other tips for clinicians to help them improve their care of this patient population:
Tip one: Offer other resources
Support groups are a lifeline for many patients with long COVID, and according to Kelly, clinicians can play a more active role in helping patients find these communities. She recommends that clinicians keep a running list of resource information—and work with their patients to discover new options—that they can share alongside a treatment plan.