Inaudible Illnesses Worry Me
“Please listen!” I shouted at the cardiologist. I’m usually placid and articulate. I made it to retirement age before I ever raised my voice to another doctor. But I had now repeated my story four times, and the man kept talking over me, without any indication that he was processing what I had told him.
A doctor who doesn’t listen limits their ability to be helpful.
Individuals with invisible illnesses — conditions that cause suffering and impairment without being readily apparent to an observer’s eye — often feel ignored, trivialized, undeserving, or resentful. As a psychiatrist, much of my work involves caring for people with invisible illnesses.
But currently I’m more concerned about inaudible illnesses — conditions that go under or untreated because doctors don’t listen. Doctors use their ears to learn about their patients. Human communication is always fraught with misunderstandings, but aspects of modern health care are leading to more instances of doctors not listening, creating more inaudible illnesses.
As a psychiatrist, I have the luxury of spending more time with my patients than do many other doctors. Often patients discuss with me not only their medical concerns, but also their concerns regarding the medical system, and in particular, their difficulties in getting doctors to listen.
An understanding of what contributes to inaudible illnesses can help make it less likely that you will suffer from one.
Invisible illness
Mental health conditions aren’t the only invisible illnesses. At least initially, many medical conditions don’t reveal themselves on the surface of the body. Many so-called “silent killers” progress for years, wreaking havoc with various organ systems, before they manifest themselves. This includes major scourges of modern health, including hypertension, diabetes, and coronary artery disease. It also includes infections like tertiary syphilis, where microbes continue to destroy the body, largely undetected, until severe damage results, as well as post-infectious conditions like post-polio or long COVID where illness arises from inflammatory and other processes long after the original invading organisms have been killed.
Some would argue that while silent, these are not truly invisible illnesses, in that there is often minimal impairment in functioning or infliction of pain until later stages of the conditions. In contrast, with true invisible illnesses, like many mental health conditions, individuals feel the full brunt of suffering and dysfunction at the same time that their bodies fail to reveal any visible signs of the underlying misery.
However, many mental health conditions aren’t truly invisible; instead of causing marks upon the body, they produce observable changes in behavior. In the days before ear buds and cell phones, seeing someone talking animatedly to themselves was a good indication they were experiencing auditory hallucinations connected to schizophrenia. Observing someone tapping doorframes or carefully stepping over cracks in the sidewalk might reveal that they had OCD. Frenetic fidgeting and apparently careless intrusions into the personal space of others might be a tip-off that the individual has ADHD.
Although many mental health conditions do have visible behavioral indicators, actions are often harder to decipher than physical bodily changes. Also, the physical marks upon the body from somatic (bodily) illnesses are often permanent or slowly evolving, whereas behaviors are transitory. Even if frequently repeated, behaviors are intermittent and thus harder to detect.
Mental health conditions are invisible not just to human eyesight, but also to biological testing. Currently, we have no assays for chemicals in the blood, no brain imaging studies or EEGs, nor any neuropsychological tests to definitively identify which individuals have a mental health condition or not. For an individual meeting full diagnostic criteria for a mental health condition, the primary evidence for their condition is usually based on a self report.
The more that a condition is an invisible illness, where detection is dependent on a patient reporting their symptoms to a doctor, the more at risk it is of becoming an inaudible illness.
Seeing is believing
Visual stimuli dominate our lives. The rods and cones of our eyes — the receptor system for our visual system, outnumber, by more than a thousand-fold, all of the receptor cells of all of our other sensory modalities combined. A greater proportion of our brain is involved in processing visual stimuli than for other sensory systems. More people fear losing their vision than their other senses.
Far more neuroscience research has been conducted on visual processes than on other senses. Our visual bias often leads us to frame attention and other information processing systems of our brains as existing primarily as visual processes.
Although our evolutionary history and neural anatomy underpin much of our emphasis on vision, it is also subject to cultural factors. Some non-Western societies rely more strongly on tactile sensations or smells to understand their connections to others and to their world. Our modern industrial and computerized workplaces and living spaces also appear to have increased the relative importance of vision.
Our reliance on vision is reflected in our language. Not only do we have many more words referring to vision than to other senses, but we describe people as being “the picture of health” rather than being the auditory, olfactory or tactile depiction of health.
Making sense(s)
When doctors evaluate patients, they do use their other senses to augment the information from their eyes. We use stethoscopes to magnify our hearing of heart, lung, and bowel sounds. We listen for the sounds joints make when being flexed or extended. We palpate for enlarged lymph nodes and distended livers, and may feel the coarseness of the hair of an individual with hypothyroidism. In an earlier time, diabetes mellitus was named because the urine of those afflicted tasted sweet; excessively high blood sugar levels meant glucose would be excreted by the kidneys.
But by and large, the doctor’s other senses are only gathering auxiliary information. Many patients remark upon how, over the years, the “physical exam” has become less extensive, less physical. It often seems relegated to the doctor just listening briefly to the heart through one’s shirt, with an additional glance down the mouth or in the ears.
In part, the physical exam has been waning in emphasis as doctors rely more and more on signs from the body garnered by blood tests and other monitoring and imaging devices. Some of our technological advances have been wondrous, providing information about the body that was previously inaccessible. But the brevity of many current physical exams also reveals a general diminution of doctors’ information-gathering capabilities. One example is that few health professionals seem able to accurately record blood pressure with a sphygmomanometer (much less spell it) because they have become so accustomed to automated devices.
The reduction in information gathered through the doctor’s eyes, fingers and nose makes it all the more important that they are using their ears to hear what patients are saying.
Learning from history
Despite our tendency to emphasize visual information, hearing remains the most important tool for diagnostic assessment. A century and a half ago, Sir William Osler, considered one of the founding fathers of modern medicine, proclaimed “Listen to your patient, he is telling you the diagnosis.”
The patient’s self report, or history, still proves more crucial information than does the physical exam. Forty years ago I was taught in medical school that taking a good history would give you a diagnosis 80% of the time — a lesson that is still imparted to students today. While this is just a rule of thumb — the single study the number was based on had a sample size of fewer than 100 cases, and actually came up with a figure of 82.5% — the message remains clear and simple: most of the time an accurate diagnosis can be made from a patient’s description of what ails them.
An important part of a doctor’s training is learning how to listen.
Listening during a medical evaluation involves framing the information that a patient shares about their health within the store of knowledge about how human bodies work. A doctor knows what might be important, and how to elicit additional answers that can clarify what is going on. If a medical evaluation were just a data dump, then Dr. Google would have already replaced doctors in the real world.
Not being heard
What my patients have been telling me about their medical experiences aligns with what I’ve encountered in my own interactions with doctors: doctors’ performance as listeners is declining. The decline stems from two major reasons — doctors are devoting less time and attention to listening, and they’re less skillful at it when they do listen.
Although national medical statistics proclaim that over the last twenty years doctors are not spending any less time during patient visits, this research runs counter to the experiences of everyone I’ve talked to. Patients and doctors both complain that insurance companies demand that doctors spend less time with their patients. One explanation offered for the impression of a decrease in doctor-patient time is that even though doctors’ minutes with patients have remained relatively steady, patients have grown more ill. With more serious medical problems to discuss, the time per condition has decreased.
I believe that is at best an incomplete explanation. I think that there’s extensive fudging on the time stamps that are logged into medical records — that time with patients is being padded out with time reading and writing notes and other clerical functions. My familiarity with medical codes has revealed inflated billing codes for the majority of my visits with doctors.
But even when doctors are in the exam room with their patients, much less of that time is spent attentively listening. Logging into medical records, scanning old notes and lab tests, checking boxes about current symptoms, and typing notes occupies significant amounts of “patient time”. I’ve even experienced numerous examples of doctors searching online about conditions or medications during an appointment so that they can sound more informed about the topic.
If a patient falls in a modern exam room, do they even make a sound?
Unfortunately, much of this just mirrors what is happening in so much of our other “human” interactions. People may be in proximity to each other, but their attention is captured by their little handheld devices, and they are looking at, listening to, and responding to those tiny screens, rather than to those present.
Interpretation
The other large barrier to listening to patients is that in many group practices and clinics, doctors don’t know their patients. Knowing a person implies some familiarity with how the individual perceives and describes their world. In particular, any information a patient provides is screened through at least two filters: their accuracy as an observer, and their tendency to minimize or maximize what they report.
Medical records today try to reduce the complexity of a human interaction into a checklist of symptoms. But whether a symptom gets a tick mark or not (even in this era of tick-borne illnesses) requires knowing how to interpret a patient’s description. Medical appointments gather more and more data, but much of the “information” is of questionable quality. Or, as computer programmers bluntly put it, “garbage in leads to garbage out”.
My most memorable medical school lecture was by internist George Engel, who formulated, along with psychiatrist John Romano, the biopsychosocial model of medicine, that emphasized that all health conditions manifest in biological, psychological and social ways, and that factors at all three levels are always contributing and interacting to produce any condition.
Engel declared that if you’re asking your patient whether they’ve had a change in their bowel habits, then it’s crucial to know whether you’re talking with a “back handed flusher” (and here he mimed an individual sitting on a toilet, staring straight forward while blithely reaching over their shoulder to jiggle the toilet handle behind them), or a “fecal microscopist” (pretending to scoop into the toilet bowl with both cupped hands, bringing the contents up to face level to peer intently into the murk).
Information about changes in bowel habits from the back-handed flusher aren’t worth much, since they never paid much attention to their stool anyway; some people just don’t know their shit. In contrast, a fecal microscopist can provide a detailed inventory of the volume, texture, color, aroma, inclusions, and other salient features of their excrement.
In addition to how individuals observe their world, it’s also important to know their habitual level of concern or alarm about their health. I know of an individual at the hypochondriacal end of the spectrum who made repeated appointments for a simple (if painful) hangnail. At the other extreme, a stoic denier may wait days after an injury or onset of illness before they consider it “serious enough” to see the doctor.
Back to that cardiologist
While running a 10K race up, along, and down a small volcanic cinder cone, my sports watch registered my heart rate to be close to 175 — for an entire hour. It took months to see a cardiologist on the Big Island of Hawaii, and by then I had experienced a few other similar events, all while running races in hot and humid weather. When I saw her, that cardiologist ordered a bunch of tests. And then she moved away before I could see her a second time.
Months later, I saw a new cardiologist for the followup. He began inauspiciously, by telling me that I was there because of an elevated cardiac calcium score. I politely corrected him, letting him know that I was there because on several occasions my sports watch had recorded heart rates higher than the expected maximum for someone my age, and that the elevated rate was disproportionate to effort: it remained consistently and extremely high while I struggled uphill, cruised along a level stretch, or plummeted downhill. I also was sweaty, light headed, and felt weak at these times.
He told me that exercise elevates heart rate. I let him know that this was not a surprise to me, but that I had run before and could exercise on my stationary bike, with my heart rate remaining more than sixty beats a minute lower. He said that biking was not weight bearing, so it wouldn’t raise my heart rate as much. I repeated that in the episodes I was describing my heart rate elevation was extreme, sustained and disproportionate to effort. He countered with the same lame explanations. After the fourth go-around, I asked him to actually listen.
He ended by saying that he was a cardiologist who worked with the heart as a pump. If I needed an electrophysiologist, I would have to go to Honolulu or elsewhere. He ordered more tests, and scheduled a follow-up three months later — fortunately with a different staff member.
I left feeling unheard and unseen.
Avoiding inaudible illness
From my own experiences, and those related by my patients, I think that some strategies can lessen the likelihood of inaudible illness.
- build a relationship with your primary care provider
- see your doctor more frequently
- bring a bullet list of items you want to discuss
- ask for eye contact
- explain what kind of observer/reporter you are
- try to keep channels of communication open
- work to improve our health care systems
The better you know your doctor, and your doctor knows you, the higher the level of satisfaction and the quality of care. Relationships are built over time. Seeing your doctor regularly reduces the likelihood of flooding them with too many concerns at each visit.
Write down ahead of time your health concerns so that when you are in the exam room you can focus on what is distressing or important to you, and you can remember the important items in what may feel like a rushed or stressful environment.
If your doctor doesn’t welcome you directly and personally, then you can offer your hand in a shake or dap and provide a smile and greeting. If they remain fixated on their computer screen, it may be necessary and appropriate to greet them again, and remind them “my eyes are up here”.
If you’re new to a doctor, it may help to explain what kind of observer or reporter you are. Maybe the cardiologist would have listened more closely if I had told him that I was a physician, or that I had run 100 marathons and coached hundreds of people to run marathons. I wasn’t a heart-rate ignoramus. Perhaps he would have been less dismissive if I had shared that years ago, after fracturing my knee cap, I had waited a week before I consulted a doctor. I wasn’t someone running (or limping) to the doctor on the slightest whim.
On the other hand, it might not have mattered. Many doctors have trouble listening. They view their job as coming up with quick and accurate diagnoses and then treating them. They may have already settled on who they think you are, and may be resistant to new and conflicting information.
It takes two to tango, but it also takes two to untangle miscommunications. You may need to be assertive, articulate, and to persevere. That may make you feel resentful — and it probably should — because it is the doctor who is being paid here to render a service. If they’re failing at the first steps of that process, don’t blame yourself.
Finally, work to change our current medical system. Most hospitals and clinics offer reply forms for feedback after visits. If you didn’t have enough time with your doctor, let them know. Send messages to your insurance provider if time constraints are a problem. Support politicians who want to improve our healthcare system.
It’s a physician’s responsibility to listen to their patients, but we can all work to make inaudible illnesses less likely.
If I’m not promoting nuance, I’m probably creating new angst.
