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Why Attributing 'Type A' Personalities to Myalgic Encephalomyelitis Needs to Stop

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I recently had an experience with a relative that caught me off guard. In passing, she mentioned reading somewhere that it’s mostly “type A” individuals who develop ME (myalgic encephalomyelitis). This was followed by a pause and accusatory glance – that felt more like a guilty verdict than a statement. I starred back, blank faced. Was I supposed to profess deeply hidden type A tendencies in that moment — as if they surely must be to blame? It was an uncomfortable situation to say the least. I responded with, “Isn’t that interesting,” and left it at that.

According to businessdictionary.com, the definition of a type A personality is:
“A temperament characterized by excessive ambition, aggression, competitiveness, drive, impatience, need for control, focus on quantity over quality and unrealistic sense of urgency. It is commonly associated with risk of coronary disease and other stress-related ailments.”

Truth be told, I’ve never been called “type A” by anyone before or after being sick. Come to think of it, I could actually use some of those attributes. I am however guilty of ambition and drive, but so are all the people I choose to surround myself with. These traits are commonplace in western society, where productivity, business and overworking oneself is conditioned, normalized and rewarded. If we’re living in a “type A+++ and more” culture, then why doesn’t everyone I know have ME? Pushing my natural defensiveness aside, I wanted to further explore the root of this idea, and the many problems I have with it. This starts by going back to the very beginning of ME.

In 1938, ME was first described as “atypical poliomyelitis.” This was due to its similarities in presentation to the infectious disease polio. The cause of polio was understood at that time, and the development of a preventative vaccine proceeded shortly after. The root cause of ME however remained elusive. It was brushed off as “hysteria” by many doctors because unlike polio, they did not have the answers. Historically this has been a ongoing pattern when medicine faces an unknown: a substitution of true scientific exploration for the belief system of medieval peasants. It is the answer of convenience, and removes responsibility from the doctor and puts it solely on the patient. In this paradigm, if a patient does not recover, it is their fault and their failing.

The early somatization of ME has deeply hindered growth in this field for decades. A disease who’s earliest description once gave weight to its severity, was then trivialized with the title “chronic fatigue.” This name implies a lack of willpower which gives rise to a deep shame – especially within our “Just Do It” culture. This was the birthplace of harmful phrases like “yuppie flu,” blaming “type A personality” types and the mass perpetuation of biases from the now debunked and outrageously flawed PACE trial. Adopting any of these ideas at face value causes the greatest harm to our community. It is bad science, bad clinical practice and bad ethics. It discredits our own experiences, simplifies our story and takes away a great deal of our power. We are still very sick, we still have no answers and these ideas continue to propagate the toxicity of blame.

One can also approach this stereotype from a physiological standpoint. To say our human bodies are vastly complex is an understatement. There is a constant intertwining of emotions and biology, and endless ways in which our personalities, feelings and thoughts both reflect and influence them. It is known that having a “type A personality” leads to higher stress levels within the body. Many things can go wrong in our bodies because of prolonged stress, and it is important to recognize this. Chronic stress impedes immune function, can make you sick and can make any disease far worse. There is even a subset of patients whose initial onset of autoimmune disease and, to an even greater extent, their intermittent flare-ups, are due to a stressful period in their lives. A lot of literature exists supporting stress can worsen autoimmunity as well. If you are going to attribute “type A” personalities to ME, you need to attribute “type A” personalities to all disease, because that is a more accurate statement. ME isn’t unique to “type A” personalities, and this belief fails to investigate the role of individual differences in vulnerability to different diseases.

collage with a wolf howling in the middle
This collage symbolizes standing up to voices which challenge the narrative of your story, especially when those voices undermine science, ethics, and equality.

Pigeonholing the root cause of a disease has happened before. Look no further than the history of ulcers. The widespread belief, spread like fact among society and the medical profession, was that stress was the root cause of ulcers. That was until 1983 with the discovery of the bacterium called Helicobacter Pylori. Without this bacterium, ulcers cannot form in the body. We do not live in isolated vacuums however, and this bacterium is found in nearly all of us. We can live harmoniously with it until certain factors (including stress, genetics, alcohol, smoking, heavy NSAID use, etc.) significantly increase the risk of causing an ulcer. This example goes to show that H.pylori is not the whole story for ulcers, and neither is stress. Human biology is complex and we need to move away from single psychosomatic theories and move towards real pragmatic science that explains models of disease in all its complexity.

These are the ethical and physiological reasons as to why attributing “type A” personalities to ME needs to stop. Let history be our reminder that when doing science (or when doing anything in a society as judgmental as our own), be very careful and very certain before pronouncing something to be truth, norm, or fact – because at that instant, you have made it markedly difficult to ever again look objectively at that disease. ME is not an exception to other diseases – we just haven’t got it all figured out yet. A sick individual’s personality traits are the last thing to place blame on. Blame is on those who have propagated the mistruths of this disease, directly impeded its due scientific exploration and who continue to deflect responsibility for those actions.

Originally published: May 29, 2018
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