Recently, I came across some videos from the American Medical Association (AMA), including a TED Talk with Lisa Fitzpatrick, on the medical literacy of the public. “Are you confused about health information? You’re not alone.”
Lisa Fitzpatrick talks about how we are facing a crisis of health literacy in the United States. We are bombarded by health information, but we are confused about how our bodies work and often don't understand what our doctors tell us.
Being so caught up in the tumulus world of chronic illness, I had all but forgotten that there exists huge swaths of our population who avoid going to doctors for entirely different reasons. Those with poor literacy and math skills often misunderstand medication doses and some, unable to read the forms they are required to fill out, stop seeing doctors altogether.
This is an issue separate from ME/CFS and Long Covid, but I was struck by the paradoxical reason that the healthy and ill alike are losing so much faith and trust in the health care system. Many are swearing off doctor visits altogether.
For those of us with poorly understood, vaguely-named and stigmatizing illnesses, our reasoning is sometimes the opposite: we understand our conditions and the doctors are the ones who can’t or won’t become educated. We are often much more informed than our healthcare professionals who tend to prescribe therapies we know are useless and medications like antidepressants that we know are going to be ineffective.
Despite opposing angles and routes in which folks are taking their health out of mainstream medicine, in the center is a unifying theme: doctors not listening to patients.
photo by Karol Stefański
It is, however, more complicated than doctors simply needing to tune in a little more. Doctors need to be educated in approachability. Many patients with low literacy refrain from asking for help because of embarrassment that they are unable to read. Making these instances visible to doctors, possibly by incorporating them into medical school curricula, could result in more compassionate and approachable heath care.
Of course, with this awareness there also needs to be more support for those with invisible illnesses so the long history of psychologizing these diseases can finally come to an end.
Almost invariably, people in the chronic illness community agree that this paradigm shift is long overdue. Many of us, including myself, believe that if healthcare authorities took seriously the explosion of post-viral illnesses that occurred decades ago, we would have a much better handle on Long Covid today.
Let’s not forget that doctors work hard. They often are not given adequate time with their patients to consider complex illnesses or to educate patients about conditions, medications, dosages, etc.
I think the medical education system needs to address this issue. Most people who don’t see doctors because of a lack of understanding, overwhelming confusion, not being taken seriously and not being given the information they asked for are only going to get sicker. Strong incorporation of these issues would make for a healthier, economically stronger society. It’s time we do something about this!
–Bridget O’Shea