“The sorrow that has no vent in tears may make other organs weep”
By Patrick Neustatter
I was reviewing the chart of Wanda D., a new patient complaining of chest pain. She was the next in line of the huddled masses of medically indigent patients at the free clinic where I am medical director.
Despite a nurse having filled me in on the “presenting complaint,” seeing a new patient is still a bit like the old game show Take Your Pick we watched when I was a boy growing up in the U.K. You never know what’s in the box, which is also medical shorthand for the examination room.
I’m a British doctor, a family physician retired after 27 years in private practice in the Fredericksburg area, who was persuaded to move from England to get married in 1982. A variety of compulsions and ideologies now make me soldier on as a volunteer at the clinic.
Like so many other doctors, I seem to have trouble hanging it up–abandoning all that accumulated wisdom, forgoing the intellectual challenges, missing the gratification that comes from helping presumably grateful patients.
Coming from the land of the NHS where there are no medically indigent–though my American colleagues assume I must be here as a refugee from socialized medicine–I am dismayed, and my English sense of fair play offended, that there is not nationalized, or even universal, healthcare here in what’s been billed as the richest country in the world.
I also feel a modicum of guilt, and a need to pay back, at having screwed a pretty good living out of my patients and the system over the time I have practiced in the U.S.
With a perfunctory knock on the door of the exam room, I stepped into the box, a dowdy room with cream-green walls, a well-worn (donated) exam table, a stopped clock, and a torn poster, in Spanish, urging women to get a mammogram.
The patient, Wanda D., was sitting on the edge of her seat, hands clasped in her lap, looking both anxious and defiant. She was 44, slightly built, slightly downtrodden, wearing a simple black dress under teased and highlighted blond hair.
I was wary right away, though I couldn’t say why in the moment. Wanda had obviously made an effort to look presentable, in contrast to so many of our more typical patients, like the Unabomber look-alike I’d just seen, with his straggly hair and beard, ragged camouflage jacket, Harley Davidson tee shirt, and profligate attitude to match.
I did my best to put the wariness aside as I introduced myself and fell into the customary opening exchange I have with any new patient.
“So we haven’t seen you before?”
“No.”
“And how are you doing?”
“Not good.”
“So sorry, but good then that you’ve come in.”
(I should emphasize here that all identifying information about Wanda—description, name, condition, diagnosis—has been altered to insure confidentiality. HIPAA and all that.)
When I did my residency at SUNY at Stony Brook, the preceptors indoctrinated us on the proper way to interrogate a patient, which they insisted was with open-ended questions. Always. When I got into private practice, I quickly discovered that with a constant line of patients impatiently waiting their turn in the box, I was going to have to speed things up.
What I wanted to know from Wanda, and quickly moved on to assess, was all those essential features of pain about which we’d had been taught to ask in medical school: location, quality, intensity, timing, aggravating or relieving factors.
Wanda’s chest pain wasn’t the burning kind, and she hadn’t been eating spicy food, so it wasn’t dyspepsia.
It didn’t hurt when she took deep breaths, so pleurisy and pneumonia were off the table.
She didn’t have any of the risk factors associated with blood clots, so it was a hard no for pulmonary embolus.
And since Wanda didn’t have squeezing chest pain brought on by exertion, it was unlikely to be her heart.
I told her all of these things, but could tell by the skeptical look she gave me that she wasn’t buying what I was selling—which was basically a clean bill of health. So I decided to go the open-ended question route and ask about her personal and social history.
The story poured forth with little prompting. She and her husband had owned and operated a successful engineering business, but he had died of a heart attack not long before. In the aftermath, everything in her life had fallen apart. She’d lost her partner, her job, her home, and, because of the mad situation in the U.S. where most healthcare is provided by employers (if it’s provided at all), her health insurance.
She grimaced and said she was now living with her sister. “I’ve never got on with her,” she added.
I still doubted there was anything physically wrong with Wanda, but decided to continue the exam since she was so clearly unconvinced by what I’d diagnosed—or not diagnosed—so far. I started by listening to her heart, more as a sort of laying on of hands than because I expected to hear anything amiss. But apart from some very slight tenderness of her left upper chest wall, the exam was unremarkable, as was the EKG I ordered up for her there in the office, sparing her my lecture on the absurdity of Americans calling an electrocardiogram an “EKG” when “cardiac” is spelled with a “C,” not a “K”–unless you’re German.
What I gave Wanda instead was my standard, jaunty line, “Your ECG is boringly normal.” But she wasn’t amused. Nor was she reassured when I told her that her symptoms, her exam, and her ECG didn’t give any indication that the pain as she described it was coming from her heart.
It’s never possible to be 100 percent sure of anything in the practice of medicine, of course, but Jerome Groopman, chair of Medicine at Harvard Medical School, says in his book How Doctors Think. patients nonetheless expect their doctors to project “poise and an aura of competence, with denial of uncertainty.”
So maybe I should have resorted to my best paternalistic doctor routine, patted Wanda on the shoulder, and told her emphatically, “Rest assured, there’s nothing wrong with your heart, my dear.”
But I knew I had to give her something, so I did.
“You may have some costochondritis,” I said, not certain of the diagnosis, but knowing, given her reported symptom, that it was possible.
She looked dubious.
“It’s a kind of an arthritis of the ribs,” I explained. “It’s quite common, can be a bit uncomfortable but nothing dangerous.”
I added that there might be a stress element contributing to whatever she was experiencing—suggesting, without coming right out and saying it, that I was fairly certain the actual source of her pain lay elsewhere.
***
Somatic Symptom Disorder is the latest term we’re meant to use for a Pandora’s Box of psychosomatic or “functional” disorders, according to the most updated iteration of the bible of psychiatric diagnoses, The Diagnostic and Statistical Manual of Mental Disorders, or DSM-5.
These conditions include things like hypochondriasis, hysteria, and conversion disorders, all manifestations of anxiety and catastrophic thinking. Patients with SSD are the ones constantly misinterpreting bodily signals, certain that any pain, tingling, headache, or stomach stomach spasm is cancer, a heart attack, multiple sclerosis, or any terrible malady a creative imagination can contrive.
In the days of Freud and the zenith of psychoanalyses, people with major problems like paralysis, blindness, seizures, and blackouts were diagnosed with hysteria. In the flamboyant language of psychoanalysts, these disorders were said to be the body’s attempt to deal with psychological, emotional, and social distress.
I like the somewhat more lyrical description by British psychiatric pioneer Sir Henry Maudsley: “The sorrow that has no vent in tears may make other organs weep.”
I don’t remember ever being taught about somatoform disorders, and I really didn’t know about them until I got stuck into primary care medicine and came across patients who would drive me crazy, going round and round demanding test after test, none of which ever seemed to pin down anything specific. And no matter what, they never got better. These patients may or may not have actually had a medical condition, but either way, whether sick or not, it became clear to me that they weren’t faking anything. For complex psychological reasons, they believed that they were ill, and nothing—no negative diagnostic test results known to humankind—could convince them otherwise.
Acceptance of SSD isn’t helped by its sexist origins, dating back to 300 BCE when Hippocrates attributed whatever he determined were manifestations of hysteria to malfunction and “dryness” of the uterus. In ostensibly prudish Victorian times, treatment for hysteria was vulvar massage to induce orgasm, deemed a therapeutic “paroxysm.” This could be done manually or with an array of vibrators and water-squirting devices.
Nowadays, of course, we have a host of proven medications and therapies—cognitive, behavioral, mindfulness-based, EMDR—that can help.
What I wanted to tell Wanda was that chest pain, her presenting complaint, was often a common manifestation of SSD—along with chronic headaches, back aches, and nebulous body aches. Other typical SSD symptoms are neurological stuff like dizziness, numbness, tingling, weakness. Also GI symptoms like bloating, colic, diarrhea, constipation. SSD is often said to be a significant component of irritable bowel syndrome. The DSM also lists a host sexual dysfunctions often associated with Somatic Symptom Disorder.
Perhaps my being the son of a psychiatrist has given me a particular interest, or empathy, toward SSD. It’s not all-or-nothing, of course. Other patients I’ve treated have had a component of SSD, which can happen when someone has a physical condition like Lyme Disease, asthma, neuropathy, lactose intolerance, etc., but reports symptoms that are disproportionate to the condition.
And these patients always seem discontented and skeptical—and, dare I say it, not a joy to deal with.
Part of what makes it so hard is that they’re usually vehemently opposed to the suggestion that they may have any kind psychological problem., And trying to force the issue can be the kiss of death to a doctor-patient relationship, which is built on trust if it’s to be built at all.
And it soon became clear that there’s already been a serious erosion of trust between Wanda and me.
“I’m still worried about my heart,” she told me after my lengthy exegesis on costochondritis and stress. “What about seeing a cardiologist?”
I didn’t think she needed a cardiologist, and started to tell her so, with the words “Somatic Symptom Disorder” on the tip of my tongue. But I hesitated, my resolve weakened by a scenario that played out a long time ago, when I was an intern working at Farnborough Hospital in Kent before I came to the U.S.
***
The life of a junior hospital doctor in the U.K. is the same as it is here. You’re sleep-deprived, overworked, bound in a sort of indentured servitude well-described by physician Adam Kaye in his book This is Going to Hurt: “Welcome to ninety-seven-hour weeks. Welcome to life-and-death decisions. Welcome to a constant tsunami of bodily fluids. Welcome to earning less than the hospital parking meter. Wave goodbye to friends and relationships….’”
I was on call one night. As ever I was tired, but this night I had actually been able to get to sleep. Then, at 2 a.m. I got a page. It was a nurse from the surgical floor. “Mr. Hatton’s meant to be getting surgery in the morning, but he’s having indigestion and can’t sleep.”
It sounded trivial so I wasn’t very gracious in my response. “Just give the guy some Milk of Magnesia, for God’s sake.”
What I should have said, but didn’t, was, “When you’re calling me about a problem with a patient, don’t tell me a diagnosis, tell me the symptoms.”
Had this poor nurse informed me that Mr. Hatton was having chest pain instead of her presumptive assessment that it was indigestion—or had I had a clear enough head about me to ask–this might have prompted a different response than Milk of Magnesia, “chest pain” being the sine qua non of heart disease until proven otherwise.
A different nurse was on duty when I came in for morning rounds and asked, in a rather nonchalant way, “How’s Mr. Hatton?” expecting to be told that he was being prepped for the scheduled routine surgery
Instead, I was informed that Mr. Hatton–who had not, as it turned out, been suffering from indigestion–was fighting for his life in the ICU with a massive myocardial infarct.
***
Still haunted all these decades later by my failure, and the cost to Mr. Hatton of nearly losing his life, I shelved my SSD diagnosis and referred Wanda to a cardiologist. I also prescribed her some pantoprazole to reduce any possible excess stomach acid, and ibuprofen for costochondritis.
Six weeks later, I saw her name on my schedule again.
When doctors complain about difficult patients, they use terms like “black hole” and “heart-sink.” I can’t deny a bit of heart sink when I picked up Wanda’s chart, and the hope that she might turn out to be one of the innumerable no-show patients about whom we complain at the clinic, wasting an appointment that someone else could have used. But no such luck.
She was not quite so well turned out when she showed up in the box this time, though still anxious and defiant. The cardiologist had done a nuclear stress test with a clear finding: “No signs of impaired myocardial perfusion,” which, as I explained to Wanda, meant her blood was running smoothly and unobstructed through her coronary arteries. The cardiologist had gone over this with her as well, and had told her in no uncertain terms that she didn’t have coronary heart disease.
But Wanda wasn’t happy with the findings–or with the doctor.
“He was not very helpful,” she complained. “He didn’t explain anything. I still don’t know what’s causing the pain.”
Not surprisingly, Wanda had already sought out a second opinion before coming back to the clinic. Also not surprisingly, her consultant had been the internet and a random Google search that turned up every alarming possibility connected to chest pain—and every other possible diagnostic procedure.
I’m all in favor of patients being informed and having autonomy, and I’m well aware that there are cases where a doctor thinks a patient’s problem is all in their head, and a patient’s self-advocacy leads to a different diagnosis. So I encourage them to be involved and empowered, the primary decision maker. But the proviso is that they have to know how to find reliable information. I’ve even written a book on the subject. The problem, as we all know by now, or should, is the countless sites out there feeding fake news and distorted information because they have a vested interest or are selling something. But the legitimate sites can be problematic, too, with their myriad warnings and cautions and recommended procedures, all fodder for someone with SSD and a tendency to exaggerate, or even imagine, their symptoms.
Wanda had read all about coronary calcium scoring. About echocardiograms. About cardiac catheterization. All reasonable tests if there’s sufficient probability of heart problems to justify them. I had the unenviable job of trying to convince her that, in her case, the sufficient probability didn’t exist.
She was undeterred. “Are there other tests we could do to be sure it’s not my heart?” she demanded. “And how do we know it’s not something in my lungs?”
I told her we’d done our due diligence to rule out the pain being caused by coronary artery disease, and she wasn’t at risk of having a heart attack. So now she was jockeying for a chest X-ray.
At this point I couldn’t come up with a more convincing argument than simply saying, in my kindest doctor voice, “It seems unlikely it will help.”
Even as I said it, I knew Wanda wasn’t going to take no for an answer. Jaded doctors have learned that when a patient is pushing for an unnecessary intervention–and if it’s not too outlandish, too dangerous, or too outrageously expensive–at some point it’s easier to just go along rather than argue.
It also seemed a good way to get her out of my hair–at least for the moment. So I caved once again and sent Wanda off with an order for a chest X-Ray, thinking that would settle things for her once and for all.
But what I wasn’t taking into account was the radiologists’ hedge.
This is not a neatly pruned row of shrubbery, but a bit of an inside joke. It refers to radiologists’ tendency to report observations from imaging studies “without having to come down hard on any focused diagnosis,” as an article in Applied Radiology recently described it.
This tendency to hedge when interpreting imaging studies is frequently justified, the article was quick to add. Imaging studies have their limitations, after all. Interpretation can be difficult. Getting it wrong makes you look incompetent, or worse. And hedging provides a degree of protection from what the journal called “potential medico-legal action.”
So perhaps it’s no wonder I’ve yet to see a radiology report in which the word “normal” appears. It’s always “a possible swelling,” “cannot be ruled out,” “this may represent” or “further testing could perhaps.”
True to form, Wanda’s chest X-ray came back showing “possible diffuse reticulo-nodular pattern of the lung fields.” Along with the all-too-common suggestion that “some further imaging may help,” and, just for good measure, “CT scan would further clarify….”
Possible. May help. Would further clarify.
But when the radiologist has recommended more tests, and when your hypochondriacal patient has seen the report, “I really don’t think it’s anything significant” is not going to cut it.
Wanda’s appointment was the last of the day. After she left, I adjourned to the break room to make myself a much-needed cup of tea. Mary, one of the full-time nurse practitioners, was also there having an afternoon coffee, and listened patiently as I blew off steam—mostly about Wanda.
“She’s one of those people with primarily somatoform problems,” I railed, “but who won’t accept it.”
Mary looked at me blankly.
“SSD,” I added. “Somatic Symptom Disorder?”
Mary shrugged. She’d never heard of it, which came as something of a surprise, since American Family Physicians reports that 50 percent of patients treated by primary care doctors and nurse-practitioners have issues for which no organic cause can be found. It’s a bit of an educational deficiency.
Anyone who doesn’t know about SSD—medical professionals like Mary–I advise to read a book called Is It All in Your Head? True Stories of Imaginary Illness by Suzanne O’Sullivan, a consultant at National Hospital for Neurology and Neurosurgery in London.
O’Sullivan cites a number of case histories of people with profound, debilitating illnesses that were completely intractable until the emotional issues were addressed.
I sent a copy of this to a cousin whose 37-year-old daughter had a continuous stream of musculoskeletal, cardiac, GI, and neurological issues and who was disabled and still living at home–and in whom I was convinced there was an enormous somatoform element. He read the book, but never passed it on. I think he was afraid it would be seen as too inflammatory.
In the old days the plat du jour SSD illnesses were hysteria, neurasthenia, shell shock. But nowadays its IBS, fibromyalgia, and–maybe most controversial of all–the GI problems so many people have that are supposedly caused by gluten.
But Mary seemed skeptical that the problems Wanda reported having would be SSD. “Could it really just all be psychosomatic?” she asked. I told her I definitely thought it was, and said I was determined to get the idea across to Wanda—after the next, expensive, most likely unnecessary round of imaging studies that I’d been roped into ordering.
I’d of course be careful when confronting Wanda not to mention “Somatic Syndrome Disorder,” having found that patients were generally more receptive when I used the term “stress-related” when broaching the possibility that their headaches, ulcers, heart issue might not be exclusively organic problems.
“It can take time to sell them on the idea,” I explained to Mary, sounding, I’m sure, like the stereotypical patronizing doctor. “And the important thing is to let patients know that you are not being dismissive of their complaints.”
Mary nodded along, but I got the impression she thought I was off my trolley.
But now I was on a mission, and saw Wanda as a challenge, someone whose treatment I wanted to get right, having invested my professional capital in the idea that she had emotional rather than physical problems—and having been met with skepticism by Mary and, I suspected, some of the other nurses at the clinic.
I scheduled Wanda for another appointment in a month. All the subsequent tests she’d once again gotten me into ordering had come up negative—or, at worst, inconclusive—and I couldn’t wait to tell her. And then shift the conversation over to SSD, stress, whatever.
When the day came, though, I noticed she wasn’t on my list of patients.
“What happened to Wanda?” I asked Cyndie, the nurse on duty.
“Oh, she called,” Cyndie said. “She doesn’t want to see you any more. She asked for Mary instead.”
***
Dr. Patrick Neustatter, M.D., was born and educated in England where he held a variety medical jobs in and around London including a stint as an editor for Medical News. He also practiced medicine in Canada, Zimbabwe, and Australia—and, for a short time, worked as a flying doctor in the Australian Outback. After extensive travel in Asia and Africa, he moved to the United States with his first wife, completing his residency in New York before settling in Fredericksburg as a family physician where he worked with the Pratt Medical Center for 24 years. Since retiring in 2010, he has served as Medical Director of the Moss Free Clinic while continuing to write monthly medical and health columns for The Free Lance Star and Front Porch Magazine. He is the author of Managing Your Doctor, the Smart Patient’s Guide to Getting Effective Affordable Healthcare and maintains the website Managing Your Doctor in an effort promote the idea that patients should be empowered and in charge of their own healthcare. He has two grown daughters, Tegan and Alexis, and lives on 30 mostly wooded acres in Caroline County with his wife Paula.
