What long COVID awareness means for people with chronic illnesses
Dr Nina Muirhead is quoted in an article by Rachel Charlton-Dailey on the Verywell Health website, September 29, 2021
Hopeful for more acceptance and understanding
There is hope in the chronic illness community that interest in long COVID will also trickle down into more acceptance and a better understanding of other illnesses.
“Whilst it feels frustrating…I think that the wave of interest in long COVID will pull up all the little boats of chronic conditions,” Nina Muirhead, MRCS, DOHNS, director of Doctors with M.E., tells Verywell.
Muirhead hopes that long COVID will make “patient experts more culturally acceptable.”
What Is a Patient Expert?
Patient experts are those who have significant knowledge of their disease and treatment in addition to self-management skills. Medical teams will sometimes lean on patient experts as educators for other patients and as a person to provide feedback on care delivery.
“Doctors can’t be expected to know everything,” Muirhead says. But at the same time, once they’ve done all the tests and ruled out what they think a patient’s options might be, healthcare providers shouldn’t “turn around and tell the patient they’re making up [their condition],” she adds.
As a doctor who has a chronic illness herself, Muirhead acknowledges she is in a unique position.
“It was only by being on the patient side that I realized the medical profession have massively underestimated hidden disease,” she says. “I was completely ignorant to the knowledge gap between where I stood, and where [the patient] sat.”
Though it has been difficult for disabled and chronically ill people to see long COVID garner attention and resources their illnesses have never received, the prevailing sentiment is one of goodwill.
Read the full article for more views from a researcher about long COVID and other people with ME.