Lisa Sanders is an Associate Professor of Medicine at the Yale School of Medicine. She created and writes the biweekly “Diagnosis” column for The New York Times Magazine, which tells the stories of patients with hard-to-solve medical mysteries and crowdsources suggestions from readers. This Q&A builds on her conversations at Aspen Ideas: Health 2022 about elusive diagnoses and chronic illness.
What drove your interest in helping people solve their medical mysteries?
That interest is hard-wired into many who go into internal medicine. I remember when I first discovered that part of what internists do is figure out medical mysteries. I was still a medical student, doing my first rotation in internal medicine. When taking care of patients in the hospital, residents and faculty attending physicians meet every morning for what is known as the resident report.
On my first day, I went to that meeting along with my resident, intern, and attending. Sitting around a huge conference table some 30-40 doctors listened as a case was presented, one piece at a time, just as the patient had presented to the physicians in the Emergency Room. Seeing how this patient’s information was gathered, added to and put together, I suddenly realized that sometimes diagnosis wasn’t the multiplication tables, where four times six is always twenty-four—which is how most of us experience it. Instead, there were times when a diagnosis is a mystery story where doctors are the detectives trying to identify suspects and choose the perpetrator. I have always been a fan of Sherlock Holmes. I read those stories many times as a teen and again as an adult. Suddenly, I could see the physician as Sherlock Holmes, with a stethoscope rather than a deerstalker. I was hooked.
How can medical professionals better tend to patients who are struggling with mysterious symptoms?
The most important job of the physician is to meet the patient where they are and to do it with an open mind. Naturally, we will have thoughts about the patient and their symptoms as we prepare to see them, review their records, and hear what other physicians have said. But ultimately we must choose to review the patient’s story and the data with fresh eyes and not allow ourselves to be led by others’ thoughts and conclusions. We must see if there are questions that haven’t been asked. We must stay alert for assumptions and conclusions that maybe should not have been made. And we must acknowledge that in medicine, there are many things we still do not understand.
There are patients who feel ill and yet who have no abnormalities on our examination or in our testing. When we have exhausted all of our search terms, run every test we can think of, and still cannot characterize an illness, we say that a patient has “medically unexplained symptoms.” That phrase leaves out two words that should remind doctors that there is much we still don’t know. We must remember that this patient has symptoms that are medically unexplained to me. Maybe they are medically unexplained now. But maybe they will be fully explained some day when we understand the body better.
Is there anything patients should know when advocating for themselves?
First, I think patients must also keep an open mind. Living with symptoms, 24/7, patients seek to understand what is happening to them to the best of their ability. It’s easy to make decisions about what these medical investigations will find and what would be an acceptable answer. I would encourage you to be open to all the possibilities.
I would also encourage patients to try to separate the dancer from the dance. To separate the answer given by the physician from your thoughts and feelings about the physician who provides it. A right answer is still right even if delivered badly or awkwardly. It would be great if all doctors were Marcus Welby (if anyone remembers who he is). Alas too many of us are Gregory House. We may have the right answer, but the way it’s delivered is just wrong. Judge the answer delivered, not the deliverer.
And finally, to the extent possible, even as you search for an answer for symptoms you don’t understand, try to find ways to live the only life we’ve been given. I get emails from patients around the country, indeed around the world, and far too often they tell me that they have dedicated their lives to finding a diagnosis. My advice would be: Don’t do that. I recognize that it’s difficult to throw yourself back into the race of human activity when you can’t even run. And you might say—and you wouldn’t be wrong—that it’s easy for me to say: I’m not sick. But this is the only body we have, and for some, right now, with what we know, even the best medicine may not be able to make it run better.
What is one thing you wish the medical field would completely abolish?
Arrogance. There is so much we don’t know. So much we have to learn. We have to be humble in the face of all we don’t know. Or, at the very least, not arrogant.
Do you have a particular story that keeps you going when times feel tough?
Many. Let me share just one.
I had a patient—the sister of one of my established patients—who had hit menopause and suddenly changed. She complained of a terrible headache that lasted for days. But it seemed more than that, at least to her sister. My patient told me that her sister had transformed from outgoing and athletic to a virtual shut-in. She’d given up her two big sports, running and climbing. And she stopped going out. There were times when her sister wouldn’t even answer her phone when she called.
I saw this patient. She was clearly depressed. She could barely make eye contact. She had a headache, she told me and that made everything hard. And her headaches sounded crazy. She had this very specific description. It was, she told me, as if an ice pick was stabbed into her head, at the top, over her ear, and this sharp stab of excruciating pain shot through her head, and down her neck. That lasted seconds and was followed by a dull ache, also excruciating, but in a different way, on the left side of her head that lasted sometimes for days. Nothing helped the headache—not Tylenol, not ibuprofen, not Percocet. Nothing.
She brought it this stack of records she’d collected over the past few years she’d spent in search of a diagnosis. The first thing that struck me was the image of her carotid artery. The carotid artery is the pipe that carries oxygenated blood from the heart to our brain. There’s one on either side of the neck. For most of us, it’s a straight shot up the neck, before it connects with the tiny arteries that supply the brain. For this woman, the carotid on the left did this crazy loop. I’d never see anything like it though it’s reported in the literature. Like so many of the doctors before me, I thought she had pain in that side of her head because of this loop. I didn’t know why and I didn’t have any solutions. She’d seen great vascular doctors. They didn’t recommend repairing it. She was sure that until that loop was removed she would continue to suffer.
I thought that might be the case as well. And I wished her well.
Weeks later I was reading and came across a medical term I had read before but didn’t really know anything about: a wonderfully 18th-century name—hemicrania continua. I was curious and looked it up. The first links that showed up were patient stories and as I read, I immediately recognized my patient’s symptoms. She called it an ice pick—so did many of these patients. Others said it was like a drill. But they described the same sharp stabbing pain followed by a terrible ache. Only on one side of the face. Some also described a watery or dilated eye on that side. Many reported a runny nose. I hadn’t gotten this history from the patient, but I was excited to find out if this was what she had.
I called her and she said yes, her eye watered and she noticed it dilated as well. She hadn’t mentioned it because she thought doctors would think she was nuts.
The great thing about this diagnosis was there was an effective treatment that was cheap and easy. It was a drug in the same family as Ibuprofen but older, called Indomethacin. And for reasons that are not well understood, this specific drug, can get rid of this type of headache. Indeed, the name of this particular group of headaches was indomethacin-sensitive headaches.
I shared what I knew with the patient and suggested she try this medication for a couple of weeks. And then I waited. Is this what she had? I couldn’t be sure.
After two weeks I called her. No answer. Fear gripped my heart. Had something happened? I called again and again. I left messages. Please call me and let me know how you are.
Finally, weeks later, she called. She’d been so busy it was hard to find the time to call. After a few days of this medication, her headache disappeared and hadn’t come back. She’d been trying to catch up on all the activities she’d missed out on, during those headache years.
I think of this story often. I learned so much. First, not everything that’s abnormal holds the right answer. Maybe her strange carotid was part of this headache syndrome. But she still has the abnormality but no longer has the headaches—though every now and then she has to take a couple of days of indomethacin. Second, my curiosity helped me find an answer. I try to always look up the things I run across and know nothing about. Medicine is vast. No one knows it all—though there are those who know more than others. I want to be in that second group but it takes work.
It also taught me how devastating pain can be. When I saw this patient, I wondered if her depression was as debilitating as her headache. Which was the leading edge of her disability? Treating her headache showed me that at least for this patient, pain was the primary issue.
Like so many doctors, I have the urge to write off symptoms to the mood disorder that so often accompanies them. This patient reminds me of the other possibilities.
The views and opinions of the author are their own and do not necessarily reflect those of the Aspen Institute.