Perception is a strange thing. Depending on certain conditions objects can appear larger, further away, darker, or even differently shaped than they actually are. Perception does not just alter how we see the physical world, but how we envision things, as well. Imagine for a moment that you need to paint an Easter something-another a nice light sunny yellow. You are in the paint store browsing the unending supply of yellows when finally you happen upon the perfect color… named “cow slip.” That happy euphoric moment of accomplishment is instantly replaced by a head shake as you wonder who in the world comes up with the names for paint. Of course, it is the perfect color so you go on to purchase it and cover all of your happy yellow Easter decorations with (mentally cringing now) cowslip.
Our perception of names, and what they are associated with, can lead us to make unrealistic or unfair judgements. Unless you know it refers to a little yellow flower, cowslip yellow just sounds bad. Unfortunately, even knowledge cannot offset certain ingrained biases. Last year the Smithsonian shared a study that discovered hurricanes and other severe storms that were given female names were an average of 3 times more deadly than their equally severe male named counter parts. Why? Because society tends to associate women with weakness. As such, people do not consider lady storms to be as dangerous, so they take fewer precautions than if the storm had been given a man’s name. The study excluded Katrina (’05) and Audrey (’57) as they were particularly more deadly than usual. Naming biases not only put us in danger of ignoring storm warnings, but they can also threaten our quality of care for certain medical conditions.
Chronic fatigue syndrome (CFS), or myalgic encephalomyelitis (ME), is a hard to diagnose and often misunderstood condition that millions of people suffer from every day. Unfortunately, because it is so misunderstood, it has developed a negative stigma as being something in the patient’s head, or simple laziness someone is trying to pass off as an illness. Worse, the dismissive attitude towards CFS is also found among doctors leading to poor diagnoses rates and symptom management. But the Institute of Medicine (IOM) is looking to change that by updating the diagnosis criteria and changing the disease’s name. The new name proposed is: Systemic Exertion Intolerance Disease (SEID). The IOM believe the new name more accurately depicts the disease and its severity. With any luck the new name will reduce the negative stigmas and improve patient care. But, is it reasonable to hope that simply changing a disease’s name will improve a patient’s social and medical treatment? Yes, because it has already happened in Japan.
In 2002 the Japanese Society of Psychiatry and Neurology renamed schizophrenia (roughly: “split mind”) from Seishin Bunretsu Byo, (mind-split-disease) to Togo Shitcho Sho, (integration disorder). Before the name change only about 36.7% of patients were informed about the diagnosis because their doctors were concerned about the potential negative consequences. Within 3 years of the change that rate improved to 69.7%. 82% of psychiatrists also reported improved treatment compliance, a reduction in negative stigmas, and better social interactions for their patients. And before anyone can harp on the stereotypical Japanese person for being too polite to deliver bad news, know that American doctors are guilty of the same.
The Alzheimer’s Association has recently reported that only about 45% of patients or their care-givers are informed about the diagnosis. Why? For the same reason the Japanese doctors did not want to say anything either. Informing their patients of such a diagnosis opens the door to hard questions, uncomfortable situations, and a wide range of other potentially negative consequences. But Alzheimer’s has something that a mystery-disease does not. It has a name. The name may be terrible; it may be associated with years of decline, frustration, violence, and death, but at least it is a name - a solid starting point to getting the right kind of help and preparing for the future. A name such as Alzheimer’s may come with a mountain of negative imagery, but for someone suffering from an unnamed ailment an answer is better than silence.
Names shape our world, help us communicate, and influence how we treat and are treated by others. Sometimes we need to take a step back to examine how our biases are manipulating our good judgment, and whether or not we need to make a change.