A hypothetical situation: due to symptoms of illness, you go to your doctor for a consultation. You sit in the waiting room for an unreasonable amount of time, fill out the stacks of paperwork, and finally make it into their office. The consultation occurs (though rushed and dominated by a need for more paperwork) and you finally leave the clinic. There is no question that a trip to the doctor can be a hassle. But in a near perfect world, the effort was worth it. You invested time in your health and you were compensated accordingly.
Except that all too often, those who need care the most are dismissed by their doctors. The patient is never cured because the proper consultation never occurred. The consultation never occurred because the patient was never believed. Illness goes from being an obstacle to being a death sentence, and while sitting in the waiting room, the next patient will ignore said patient’s obituary in the paper.
Because the first patient was exaggerating, lying, hysterical, and overly cautious. Because the story they presented wasn’t worth believing. Because it was easy to dismiss someone who was sick and scared when they placed their life in other people’s hands.
What’s one life when you have hundreds to take care of and the check comes anyway?
Scenes like this are more common nowadays than we’d like to think. For much of human history, people believed that serious illness was a manifestation of religious punishment or an “imbalance of the humours”. Until less than two centuries ago, no continent had a life expectancy higher than 40 years (Britannica). Violent conflict, poverty and poor hygiene meant you were lucky if you were able to get a doctor, let alone one who would help you. Your best bet was, in all likelihood, to sit tight and rely on traditional medicine.
With the introduction of scientific medicine in the 18th century, focus was unsurprisingly turned to the most pressing challenges faced then: combat and workplace blunt injuries, infection, and childbirth mortality (Griffin Benefits). The illnesses that pose the biggest threat to modern society, such as heart disease, cancer and autoimmune disorders, were largely brushed under the rug because they ranked low on public health priorities and were undoubtedly more complicated to investigate, diagnose and ultimately cure (Chronic Disease). That limited focus has, unfortunately, persisted until today despite medical advances. And because of the way they are taught, many doctors equate misunderstood illnesses with nonexistent ones (History Collection).
Nowadays, developed countries do not face the same issues as in previous centuries, but an ageing population, among other factors, has led to an increase of chronic illness. These long-term and often debilitating illnesses, until recently, could have been attributed to a dozen other factors and stopped in their tracks by an early death. In the modern day, they are the biggest strain on developed healthcare systems. 90% of modern American healthcare costs are caused by chronic conditions (Chronic Disease). 6% of the world’s population have what are classified as rare, long-term illnesses, and markers for autoimmune disorders are increasing exponentially due to unexplained, but likely environmental, factors (National Library of Medicine) (National Institutes of Health). Half of the deaths of developed countries are caused by chronic disease. And the worst part: our healthcare systems haven’t even begun to catch up.
Take CFS. Chronic Fatigue Syndrome, also known as Myalgic Encephalitis, is a long-term and poorly understood condition where previous infection or immune/hormonal imbalances lead to extreme fatigue, cognitive impairment and pain. Due to a lack of research and knowledge on the topic, doctors publicly invalidated the disorder up until recently. Scandals such as the forced institutionalisation of CFS patients brought to light the gross neglect perpetrated by doctors who continued to believe their issues were psychosomatic, or in other words, ‘in their heads’ (MEpedia). Half of CFS patients say they have been dismissed by doctors who claimed their issues were psychological and failed to demonstrate interest in their symptoms (Daily Mail). Government-funded programs such as the PACE experiment in the UK have had serious consequences for its subjects. The resounding theme that shines through CFS stories is this: patients are being ignored.
These disparities magnify other crises our healthcare systems face. Women, for instance, have historically been the subjects of medical ridicule. The issue persists today: women are still diagnosed years later than men with the same conditions, partially due to the fact that women were not required to be involved in clinical studies until the 1990s. Painful conditions like endometriosis (an overgrowth of reproductive tissue in the pelvis, stomach and even lungs) take an average eight years to diagnose, and many patients claim their symptoms are routinely dismissed as ‘woman’s pains’ (Endometriosis UK). It is no coincidence that the issues which are most underfunded and misunderstood are also most common in women. It is also no coincidence that diseases like ovarian cancer are dubbed ‘silent killers’ not because of a lack of symptoms, but a lack of medical interest and concern. These statistics expose the scale of indifference towards the conditions of patient populations which are not valued. The cost? People’s lives.
The issue affects all healthcare models. Preventable medical error is the third leading cause of death in the US. In the US and Europe, approximately 15% of adults will be misdiagnosed at some point in their lives (Cloud Hospital). Doctors worldwide continue to practise what is dubbed ‘cottage industry’ practices, where doctors treat patients in ways they are most accustomed to rather than with better, modernised standards of care (Chronic Disease). The balancing act of private versus public systems has been described like this recently: on one hand, private healthcare sidelines less fortunate populations and prioritises medical procedures which will rack up costs (think conventional techniques like surgery). On the other hand, public healthcare promotes “mediocrity and indifference” (TED Talk). We may believe that one system has significant advantages over another, and they may. Patients still lose out on care either way.
There is no doubt that a broken healthcare system is better than a nonexistent one. But we should have reached a point whereby a patient’s health should not have to be deprioritised when their illness is seen as too complex, selective, or blown out of proportion. Invisible illnesses like CFS or endometriosis are hard to deal with. It is one of the greatest frustrations of the people who have devoted their lives to helping others when they run out of cards to play, but their pride cannot come at the expense of those they are supposed to protect. A medical system which promotes the idea that an unknown answer is nonexistent, that a textbook takes priority over a patient and that the conventional course of action is the better course of action is a medical system that has failed. More than anything, the past few centuries have shown that if there is anything that our doctors lack, it is not knowledge: it is empathy when lacking the former. Any patient with a chronic illness will tell you that they would infinitely prefer a doctor who told them “I don’t know” than a doctor who said that there was nothing to know.
In 2017, American doctor Charles Barde wrote a book titled Diary of Our Fatal Illness which narrated the story of a man struggling with chronic disease. Its ending encapsulates his hopes for a future medical system:
My father said, “I suffer pain.” The doctor said, “where?”. The patient said, “there”. The doctor said, “here?” and the patient said, “there and there and there and there”. The doctor said, “when does it hurt?” and the patient said, “when I stand, when I bend, when I am touched”. The doctor said, “how can I help you if the pain is everywhere?” and the patient said, “how can you not?”.
(Barde, 30)
A system in which patients are heard. A system in which the Internet is not the only source of comfort a patient receives. And above all else, a system in which the doctor believes the patient even when the science doesn’t–yet.
Bibliography:
Bardes, Charles. Diary of Our Fatal Illness. Google Books, University of Chicago Press, 21 Mar. 2017, www.google.es/books/edition/Diary_of_Our_Fatal_Illness/PZYtDwAAQBAJ. Accessed 26 Oct. 2023.
Britannica. “History of Medicine – Verification of the Germ Theory.” Encyclopedia Britannica, 2023, www.britannica.com/science/history-of-medicine/Verification-of-the-germ-theory.
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Collins Dictionary. “Chronic: Definition and Meanings.” Collins Dictionary, 2023, www.collinsdictionary.com/dictionary/english/chronic.
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