Disease names are confusing, not just for medical students studying for licensing exams, but also for patients who are being told they have a particular diagnosis. I am not referring to diseases that have lots of syllables like phosphofructokinase deficiency or pseudopseudohypoparathyroidism. I mean something as basic as the classification system for head trauma. I recently attended a traumatic brain injury support group meeting, and many participants were upset that they had been diagnosed with “mild” TBI because the impact their brain injury had on each of their lives was anything but mild. Many felt the name given to this diagnosis was invalidating the profound severe impact their injuries had on their lives.
The World Health Organization recommends when naming new diseases, the name should be scientifically sound and socially acceptable. The name should have generic descriptors based on symptoms and other features of the disease. The WHO also makes clear that terms that may lead to stigmatization of people from a geographic location, culture or occupation should be avoided. Names like the “The Spanish Flu,” “Legionnaire’s disease” and “Monkey Pox” are not advisable. Diseases named after people who led or participated in horrific unethical experiments during the Holocaust have been changed and disease names that support systems of oppression, like slavery, are gradually being changed and taken out of parlance. Likewise, people with three copies of their 21st chromosome have gone through a series of harmful names before settling on Down’s syndrome, named after the scientist who identified the genetic finding of this syndrome.
To better understand this, consider a disease that we are all familiar with like the coronavirus that was responsible for the Covid-19 pandemic. When anyone today hears Covid-19, they can immediately envision the round virus surrounded by spike proteins that make up its crown, or its corona likening it to the sun on a solar eclipse. The WHO provided this name to reflect that “Co” refers to “Corona,” “vi” refers to virus, the “d” refers to disease, and “19” is the detection year. This name makes sense to the medical and scientific community and the public quickly came to recognize the name as well, without necessarily understanding the origin. This nomenclature made it so this name was not harmful to anyone. However, there were attempts by many to name this disease after the country or region where it was first identified. Unofficial names like “Wuhan virus” and “China virus,” contributed to a surge in anti-Asian hate crimes and may have contributed to elevating geopolitical tensions early in the pandemic.
Diseases often get their names from a physician or scientist who made the discovery, national authorities and reporters in the media, but rarely are diseases named by the patients who experience them, unless the patient happens to fit one of the aforementioned categories. However, diseases have been named after actual patients like Lou Gehrig’s disease which was named after the famous New York Yankees first baseman. There are even diseases named after fictional stories like Lilliputian hallucinations and Alice in Wonderland Syndrome. Although it may sound clever and descriptive to the neurologists and psychiatrists, I can’t imagine what it is like for a patient to go home to their family after seeing a neurologist and saying, “I have Alice in Wonderland Syndrome.”
As we move towards a more patient-centered approach to the practice of medicine, it make sense to, at least in some instances, place the patients at the center of the disease naming process. Patients are the ones who will live with these diseases and including them when making this determination gives them the opportunity to consider how they feel being referred to by the name of that particular diagnosis. This can and has been done. Take for example the diagnosis of post-traumatic stress disorder. It was a group of U.S. Vietnam veterans, along with allies in the mental health field, who in 1980 won the fight to have the diagnosis of PTSD added to the American Psychiatric Association’s Diagnostic and Statistics Manual. Before that, this condition was given numerous names that often blamed the service members for their condition.
For better or worse, names have always mattered. There are many who believe children may have higher likelihood of success based on the names they were given early in their lives. Many people after immigrating to the U.S. go through a process of anglicization of their names, partly because there has been data showing that those with anglicized names may appreciate greater success in school and in their careers.
Much like being a Montague or a Capulet mattered in “Romeo and Juliet,” the names given to diseases also matter. Because names matter so much, it is worthwhile to consider including patients in the discussion when naming certain ailments. This will not be possible, and may not be necessary, for all diseases, but there are many instances where a patient’s input and their lived experience with a disease may add a great deal to this taxonomy. By including the patients, the discussions may be quite different, blind spots will shrink and this could lead to a completely different and humanizing experience with a disease for the many patients inflicted with these ailments.
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