Opportunity Area 6:

Insight

Navigating health care and assistance systems requires that you educate yourself, advocate for yourself, and coordinate care for yourself. This is a tall order for anyone—much less for someone with a chronic illness.

The same symptoms that necessitate a person with Long COVID to seek health care and assistance can get in the way of their ability to successfully access them, such as cognitive dysfunction and fatigue.
Language; cultural barriers; biases against your race or ethnicity, gender, sexual orientation, age, or other aspect of your identity; and a lack of time or financial resources can further complicate the navigation process. Those with prior interfacing with the health care system and assistance programs have an advantage.
Even many care programs designed for people with Long COVID, such as some Long COVID clinics, provide disjointed care.

“I am the coordinator, I’m the advocate, I’m the insurance specialist—and I’m the patient.”

—Emily, hospitality manager, daughter, and person with Long COVID

“There are some people who have symptoms that are so debilitating that they cannot complete the application process for disability benefits.”

—David, Long COVID advocate and legal advisor

“When the PPP loans became available, I couldn’t negotiate them. I couldn’t make heads or tails. [Later,] the neurologist was able to very quickly discover that my short-term memory was broken.”

—RaMell, jewelry designer, entrepreneur, and person with Long COVID

“Isn’t there a fable about eight blind men who each are touching a different part of an elephant, and none of them are making the connection that all of these things are connected? It feels like that [with Long COVID]. I’m also a fibromyalgia patient, so I’ve dealt with this kind of stuff before, with not believing that one symptom might be connected to the other.”

—Renee, health insurance agent, animal rights advocate, and person with Long COVID

“Long-haulers have no team. They’re being ping-ponged from provider to provider. Nobody’s talking. There are drugs interacting that are not supposed to be. Somebody is going for an MRI with contrast today, and a brain MRI with contrast tomorrow, and nobody’s tracking or monitoring these things. We need teams, not one-offs.”

—Amanda, Long COVID advocate, mother, and person with Long COVID

System Navigation

Insight