Who Heals My Doctor Self?

Sandra Hager Eliason

I was standing in the kitchen on an ordinary Thursday, about to make a cup of tea, when a wave of lightheadedness suddenly washed over me, and I felt off balance. My heart began to pound. Take your pulse, I remember thinking, and placing my fingers on my wrist, I noticed irregular heartbeats. I sat down and counted the irregularities: several normal beats, pause, heart flip-flop, quick beat. These are PVCs, I thought, recognizing the premature ventricular contractions I had diagnosed often during my thirty years of practice as a family medicine doctor. These extra beats—caused when the normal pacemaker does not fire and the ventricle takes over initiating a beat—could be dangerous, or just a temporary inconvenience, depending on their pattern. I monitored the beats for the time it took the symptoms to resolve, less than ten minutes, then shrugged and went about my day. Just one of those things. (Yes, doctors make the worst patients.)

The next day I walked my usual two miles. Three blocks from home, I began to feel pressure on the left side of my chest. Could it be my heart? I began reviewing the risk factors. Born male?  Nope, doesn’t apply. Family history? High cholesterol? Smoking? Nope, nope, and nope. I was brushing off the symptoms when the palpitations came back. I slowed and walked carefully to my front door, where I sat down. The symptoms again resolved with rest, and I otherwise felt fine, so I let it slide once more, priding myself on not being an overreactor, not one to jump at any symptom.

The following morning, as I reached into the closet, I was overwhelmed with lightheadedness. I braced myself against the wall to make my way to the bed. As I lay down, the palpitations started, and I began to tremble. I could feel the sweat running down my face and between my breasts.  In spite of my logical mind telling me it couldn’t be, the symptoms were those of a heart attack. This was no longer something to brush off.

My husband was out of town, so I called my daughter to take me to the emergency room. She wanted to stay with me, but because of Covid restrictions, she was turned away. When I told the woman behind the glass partition I had chest pain and palpitations, she immediately called for a wheelchair to usher me through the locking steel doors into a curtained cubicle. Once there, I put on a stoic face commensurate with my position as doctor. Medical training turns people into patients, othering them, and I knew I was not an “other.” Doctors are supposed to be objective, not appear weak, and to know what is going on, so I maintained a professional demeanor and used medical jargon to let the staff know I was one of them. I analyzed the symptoms to make sense of what was happening, and to eschew giving in to the panic of an unknown diagnosis. If I kept telling myself it was nothing, I could keep fear at bay while I waited for each result to prove this was not something to worry about.

The EKG showed I did indeed have the irregular beats of PVCs, but they were stable, not a concerning kind. The blood tests for a heart attack all came back normal. With each result I felt lighter, until a different blood test, one looking for a clot in my lung, was minimally elevated. It had only been checked because I had a blood clot fifteen years earlier, and my symptoms now were not the same, so I tried to take this result with calm, ignoring the emotions attempting to push to the surface. I distracted myself by texting my husband and kids, giving them factual explanations of the tests as though the patient were someone other than me. If I could explain it, interpret it for my husband and girls, I could stay in control, be the expert doctor, not a patient who needed to be told what her body was doing. In my practice, I prided myself on giving information in terms people could relate to, making the scary diagnosis something they could understand. If I could do the same for myself, the symptoms I couldn’t control would become logical, managed by my explanatory brain.

A CT scan of the lungs did not reveal a clot, but it was not exactly normal—there was some haziness that could indicate inflammation or infection. Again, my logical mind told me this couldn’t be anything of concern—I didn’t have a cough or shortness of breath; in fact, I had no lung symptoms.

My family was worried when I called to relay the results. They wanted more explanation, and I patiently gave it, downplaying any significance. I told them it didn’t seem this abnormal result was related to my symptoms. The ER doctor agreed and told me to follow up with my primary care physician. I left the hospital with an unexplained finding and no answers. I was worried, but also puzzled—the CT result didn’t fit my symptoms, and the symptoms I did have had no identified cause. What could the diagnosis be?

My husband returned to town in time to take me home. He had lived with me long enough to know that I would give him medical explanations and look for more information, hold any worry inside. I began researching. While I wanted to tell myself this was nothing, I had to admit something caused my symptoms. Between dry medical articles, I stumbled upon a series by Ross Douthat, whose opinion pieces in The New York Times described his journey with strange symptoms that resembled mine. He saw multiple doctors over the course of months while searching for a cause and was told none was found. He became one of an estimated thirty million Americans with unexplained chronic diseases who search for answers and don’t find any—until Douthat finally saw a doctor who diagnosed him with Lyme disease.

Lyme disease—a lightbulb went off in my head.

I spend summers in Northwestern Wisconsin, a hotbed of Lyme disease. I hadn’t noticed any ring-like rash, had seen no tick (although the tick that carries Lyme is easily missed), and didn’t remember any fever or swollen lymph nodes. Without those clues, Lyme disease wasn’t something I would have thought of, although I knew those signs of a tick-borne illness were not always present.

I googled “cardiac symptoms in Lyme disease.” The CDC summary described my experience perfectly: “Lyme carditis can cause light-headedness, fainting, shortness of breath, heart palpitations, or chest pain.”

I had seen multiple patients with suspected Lyme disease, had observed the ring-like rash, and looked at lots of tick bites. Because the blood test for Lyme disease is notoriously unreliable, frequently giving a negative result when the disease is present, I had concluded that for my patients it was better to treat a suspected case than risk the consequences of untreated disease. I tried to keep patients’ wellbeing at the center of my practice, to be the caregiver who understood how an illness was affecting them instead of the powerful giver of cures. I wanted to be someone who could find the most helpful, least harmful remedy. There were times when compassion outweighed facts, and prevention far outweighed a later cure.

I knew Lyme disease was insidious, sneaking about the body. The bacteria that causes it wasn’t even identified until 1981, although the condition was first described in the 1970s when strange symptoms appeared in children and adults near Lyme, Connecticut. That’s why it’s called Lyme disease, not Lyme’s; it’s named after the town. It is in part so insidious because it spreads through the body slowly, proceeding in three stages. The first occurs at the point of the tick bite, where the bacteria spreads locally, often producing the ring-like rash diagnostic for the disease. If the rash doesn’t occur, the diagnosis can easily be missed.

The second stage happens weeks or months later, when the bacteria begins to spread through the body. Symptoms may be flu-like, or present in other vague ways, such as headache, fatigue, joint weakness, palpitations, or chest pain. The latter sounded like my situation.

The third stage can occur months or years after the bite when the bacteria have taken up residence in the body, causing a multitude of ill-defined symptoms, most commonly arthritis, dizziness, migrating pains, and mental fogginess. When not treated, they become chronic, as in the patients identified in the seventies who went untreated, leading to chronic, and, in some cases, debilitating symptoms. These early Lyme patients joined those affected by other undiagnosed chronic diseases. If I had it, and it was not treated, I could be left with problems I did not want, such as those I was experiencing, or my worst fear—mental fogginess. I had always gotten by on my brain, and I wanted to preserve it. I had seen my patients struggle with debilitating undiagnosed illness, and never wanted to be in that situation. Or see others there, for that matter, which is why I treated anyone who I even suspected may have Lyme disease.

My regular doctor was not available to see me after the hospitalization—the one who knew me and my tendency to minimize. I believed she would take me seriously because she knew I was not an overreactor. Instead, I was scheduled with a doctor I had never seen before. Since I had no previous rash, fever, or swollen lymph nodes, would he take me seriously? Would he order a Lyme test? And if it were not positive, as is frequently the case, would he consider that Lyme was the likely cause, and order treatment?

I knew the routine of a doctor’s visit. It begins with a patient’s symptoms. They are what the patient feels and tells the doctor, for the doctor to interpret. The medical note contains the History: what the patient tells you is happening; Exam: what the doctor can validate through examination or testing; Assessment: The physician’s judgement or opinion based on the results of the exam or tests; and Plan: the proposed treatment. In other words: listen to the symptoms, frame a hypothesis about the cause, validate the hypothesis, and pronounce the diagnosis and treatment.

The doctor I saw would want to make a conclusion based on any evidence and follow the science to an appropriate diagnosis. I would have done the same. A doctor searches for evidence because, we are taught, patients don’t have the knowledge to diagnose themselves. Even a doctor can be less than objective when trying to self-diagnose. The scientific process is expected to lead to the correct answer. And most often, it does. It works well for diseases like diabetes, high blood pressure, or thyroid disease, where test results are numbers that are measurable and can be followed.

But a negative Lyme test does not rule out Lyme disease, and for millions of Americans, multiple negative tests only mean there has been no discoverable cause for the distress they are feeling. They may have an atypical presentation of a disease, making it unrecognizable; the cause of their illness may not yet have been discovered; or there may be no appropriate test to diagnose their condition. Without a definitive test, following the science to a specific diagnosis isn’t possible. For most people with an undiagnosed chronic disease, multiple specialist consultations and laboratory tests follow. Being told that nothing is found is not reassuring. Instead, it invalidates the symptoms, because “nothing” is causing them. I would like to believe I did not put patients in that situation; rather, that I tried to offer hope and to ease the symptoms. But I had seen it happen all too often. When nothing is found, patients are frequently told it may be due to anxiety or stress. They feel judged, with the implication that their symptoms aren’t “real.”

While it is true that depression or anxiety can cause physical symptoms, attributing all symptoms without a diagnosis to stress not only misses many legitimate chronic conditions, but it also causes people to have to continually prove to family, friends, and medical personnel that they really are experiencing symptoms that are affecting their lives. The relief of a diagnosis makes it real.

I have always tried to downplay my symptoms, probably because I never want to be the person with undiagnosable disease going from one doctor to another and being told nothing was found, causing my symptoms to be discounted. I always want to be taken seriously, as I assume everyone does; but now with symptoms that didn’t seem to point to any disease, I could be one of the patients who are written off. One of the first lessons in medical school is not to catch “medical student’s disease,” thinking you have every illness whose symptoms you learn about. I didn’t want anyone to think I caught a disease by reading about it. I wanted to approach this unfamiliar doctor in a way that would make him consider my suspicion of Lyme disease as a likely diagnosis.

Being a woman of a certain age requires a demeanor that is not threatening and does not challenge the expert you are there to see. Male bias persists in medicine, and having navigated it firsthand, I tried to cultivate an approach that would not make me be viewed as one of them—the woman labeled “hysterical,” who demands treatment for her imaginary pains. Hysteria was once a common diagnosis for women, used whenever women displayed what were considered “inappropriate” emotions. Symptoms of heart disease in women are still often attributed to anxiety, or those of autoimmune disease to depression. I had entered the Google rabbit hole, reading everything I could find on Lyme disease and cardiac or lung symptoms, as one of them would do—the one who based her symptoms on the internet and was convinced she had what she found there, trying to tell the doctor what to do, challenging his authority.

You have demonstrable findings, I reminded myself. The abnormal CT scan and documented PVCs were “real” results. But neither pointed to anything specific, and both were related to separate body systems: pulmonary, cardiac, possibly rheumatologic with the suggestion of inflammation in my lungs. How would this doctor put them together, and how did I give him the authority his gender and position assumed while advocating for what I believed to be my diagnosis?

I sat in the generic exam room waiting nervously, staring at the counter full of medical instruments, bulky exam table, and bland nature prints on the wall. There was a knock, and the doctor entered. I scrutinized him as he strode toward me—tall and blond, maybe early fifties, with facial expressions unreadable through the Covid-required surgical mask. After a brief greeting, he seated himself at the desk and turned to the computer. He reviewed my chart, then asked me about my symptoms. I told him everything that had happened and suggested my diagnosis with what I hoped was a combination of humility and determination. I didn’t say I based my decisions on an editorial and the internet; rather, I discussed patients I had treated in my own practice, their symptoms, and medical research I had done to diagnose them. I explained how their symptoms had resembled mine. Was I pulling the “doctor” card? I hoped my credibility as a fellow physician would be sufficient for him to believe me.

He perused the computer while I stared ahead stoically, waiting. He must have looked up Lyme symptoms and diagnosis, because when he spoke it was to state the treatment. “Three weeks of doxycycline would treat Lyme. It’s a possibility. I’ll order the Lyme test, but also some tests for inflammation.”

They were the science-based things to follow.

“Let’s also get you scheduled to see pulmonary and cardiology. They’ll have more tests they’ll want to perform.”

Each of the specialists would follow the science to look for an evidence-based diagnosis. I too have been trained to follow the science and would have done the same. Douthat’s articles helped me tie the symptoms together and think of something that maybe would not be validated scientifically.

Back at home, I waited impatiently for the results, wondering what other conditions may show up. When the results arrived on my patient portal, I opened them nervously. The Lyme test was negative. Of course, I mused, now I’m in that gray area—to treat or not to treat? Only one of the other tests was positive, and again it was not definitive. The Antinuclear Antibody, or ANA, is another nonspecific indicator of inflammation. That positive result precipitated more tests, looking for any number of autoimmune diseases. None of them was positive.

I could now safely say what I did not have but had no diagnosis for what I did have.

I googled ANA to see if it could be positive in Lyme disease, and found it was frequently elevated. The diagnosis of Lyme was increasingly likely, so I felt it was important to start treatment as soon as possible. I didn’t want to wait until the consults and specialized tests found nothing while the disease progressed to chronic arthritis or worsening of my current symptoms, particularly since the specialist appointments were months out. I had seen it too often, patients’ symptoms increasing while they went from one specialist to another, referred for more tests when the obvious ones were negative. I had watched the increasing anxiety turning to despair and often resignation when nothing was found and they were told in one form or another to “live with it.”

Without a positive test result, how can a doctor decide whether to treat? In Douthat’s case, since he lived where Lyme disease wasn’t prevalent, the first doctors he saw did not consider the diagnosis. To treat a disease, you first have to think of it. Often you must consider the diseases prevalent in the area where a patient lives or has been travelling. Then, it’s important to look at the constellation of symptoms that constitutes a disease rather than isolating each symptom to a specific body system.

I had only previously known the cycle from the physician side as I saw patients with no diagnosis struggle. Then, I felt the frustration of not being able to give them an answer or find appropriate treatment; now, as a patient, I understood the helplessness of waiting for an answer, depending on another to validate your experience or give you what you think you need. Ironically, I had only considered Lyme disease after being reminded of it by another’s experience. What may I have missed with my patients by simply not thinking of the possibilities; by focusing on finding the “definitive” test?

The new doctor called me to review the test results. “Everything appears normal,” he said. “We’ll see if Pulmonology or Cardiology have any further answers.”

“What do you think about the possibility of Lyme disease,” I asked, “Given the symptoms and the positive ANA? And since I spend my summers in Northwestern Wisconsin where its prevalent?”

“Well, as you know, the ANA is very nonspecific. It could be associated with any number of things.”

“I know,” I responded slowly, calmly, trying not to sound as though I were pressuring him.  “But the symptoms, along with the inflammation, seem to point to Lyme as the diagnosis. I have been researching Lyme, and it seems to make sense.”

There was a pause, and I could feel my shoulders tighten. As a female physician, I had often received a patronizing response when I pushed too hard, my pressure causing another doctor to hold their own position more firmly. I could push back a certain amount, but if I sensed too much resistance, the best course was to back off. I wanted to keep this doctor open to suggestion. I felt like I was holding my breath until he finally spoke.

“Doxycycline is relatively harmless, and it won’t interfere with the other, more evidence-based tests cardiology and pulmonology may do.”

I breathed a sigh of relief. I would get the treatment I had hoped for. I presume he treated me based on our geographic location, my symptoms, and probability—or possibly because I was a doctor and believed this was the correct diagnosis, that my research was medical, and not from Google. I thought of my friend who had a ring-like rash that looked to me like the Lyme rash, but whose doctor didn’t think so, and didn’t treat her. She took his word for it and now had chronic arthritis. I knew I would have pursued this, no matter what this doctor said, but it’s a tightrope walk, knowing how much to advocate. We doctors are taught we are the experts, we know more, our answers are correct. But they aren’t always, and sometimes the patient’s extensive research may be the most up-to-date data on an unfamiliar disease. When that’s not accepted by the doctor, will advocating for yourself make you one of those “bad patients” who won’t take the doctor’s advice? Even as someone inside the system, I knew instinctively that I was at a disadvantage in this relationship, relying on someone who had to trust my presentation and my assumed diagnosis.

Once a doctor graduates from medical school and completes a residency in their chosen field, they are on their own. They have to hope they have learned enough and know enough to encounter each patient who walks through the door and believe that the conclusion they arrive at is correct. The patient wants the doctor to be right, and the doctor wants to be right. Continually questioning one’s judgement as a doctor can lead to over-testing and wrong diagnoses. It is important to believe in yourself and your diagnoses.

This time, my approach to the doctor had worked, but an unspoken “don’t try to tell me what to do” may be equally as likely a response. I had the trump card of pulling out my knowledge, the “expertise” of having treated this condition, and the other doctor’s presumed bias that as a physician, I knew what I was talking about. Would an “ordinary” patient as easily convince their doctor? It depends on the doctor, the condition, and the assumed knowledge of the patient. Unfortunately, it often involves the doctor’s implicit bias of who is credible. I chose to continue learning and deal with uncertainty by saying to patients, “I’m not sure about that, let’s look it up together.” But many doctors don’t, believing in the infallibility the system instills.

I started the antibiotics. Within a few days the palpitations lessened, one heart flip-flop at a time. I admit I was predisposed to find the antibiotics helpful, possibly incurring the placebo effect. But the lightheadedness also disappeared, and my chest pains resolved. Then a strange thing happened. The lack of focus that had been annoying me, the slight confusion about how to approach everything, and a marginal inability to concentrate, lifted. I hadn’t known I was foggy until suddenly I wasn’t.

Could a few days of antibiotics make this difference, or was I responding to my hopes that this was the cure? I had heard and read about unconventional treatments tried by people with undiagnosed chronic diseases, and how they felt better after using something they wanted to believe worked. Was I doing that? But it was undeniable that my symptoms were better each day, and they did not return.

When I saw my own doctor after finishing the treatment, I asked if she thought it was Lyme disease, since my symptoms had completely resolved. She equivocated, saying it was likely an infection of some sort, but with no positive test, she was not willing to confirm it was Lyme disease. The main thing was that I got better, she said. I was not reassured. It somehow felt patronizing. Was that an overreaction?

I continue to believe I had Lyme disease, but I marvel that reading the articles of a non-doctor, someone not medically related in any way, led me to treatment. As a doctor, I was supposed to know, or find, the answer, not get it from someone untrained. I was supposed to know. As doctors, we are all supposed to know, which is why the power differential exists, and why so many people expect to have to justify their symptoms when they see their doctor, to have to convince their doctor the symptoms are “real.” But if I hadn’t found those articles, and the diagnosis never occurred to me while I continued to follow the science to further tests and found “nothing,” would anyone in the medical system have thought of it?

The world of knowledge is expanding, and it is unrealistic to expect an individual doctor to know everything. The scientific method we are taught, to follow the evidence to the diagnosis, falls short when there are so may possible new conclusions; it may not be possible to even consider all the tests or all the diagnoses. As research becomes more available to everyone, “I read it on Google” may not be a reason to automatically dismiss a patient’s research. Yes, there are multiple conspiracy theories, much false information, and claims of fictitious diseases on the internet, but there is also credible information from sites such as WebMD, the Mayo Clinic, and others, sites which inform patients more fully on symptoms they may be experiencing. It is important for doctors to listen to patients, consider their sources, and discriminate between what is bogus and what is credible, not just dismiss it out of hand. I have found credible studies simply by googling a diagnosis or medication, as I did in the case of my symptoms.

I will never know whether calling on the credibility of the profession convinced the doctor to treat me, or if the diagnosis would have been overlooked, as it was with my friend.  It’s possible that, as an older woman trying to tell the doctor what to do, I would have had my research ignored. It’s discouraging that I instinctively felt I had to level the power balance as I entered the medical system from the other side, that I had to demonstrate my credibility as “one of them” to feel safe.

But I know I will continue to demonstrate my knowledge and position as a doctor each time I encounter the system as a patient, in an attempt to feel heard and retain a semblance of equality in the relationship. That is what I need as a patient. As a doctor, I need a strong knowledge base and confidence in my diagnostic skills, but I also need curiosity, the willingness to learn more, and the ability to listen to another’s concerns, so that together we may find answers that are both science-based and healing to a patient’s dis-ease.

Sandra Hager Eliason entered medical school in 1976 with an eighteen-month-old child, only squeaking by the admission interview by telling the committee her husband approved. Raised on the Iron Range of Minnesota with the expectation that she would be a wife and mother, she was told she could go to college to be a teacher or a nurse, “to have something to fall back on” in case she couldn’t get married. She practiced medicine until her retirement in 2017. Eliason won the Minnesota Medicine Magazine Arts Edition writing contest in 2016 for her piece “The Vacation,” which began her transition to full-time writing. She has had essays published in Bluestem, West Trade Review, and the Brevity blog. Her work has been anthologized in the e-book Tales From Six Feet Apart, in Pure Slush: Cow Volume 23, and is forthcoming in Chicago Story Press. She is a book reviewer for Hippocampus and is currently querying publishers for her memoir Heal Me: Becoming a Doctor for all the Wrong Reasons (and Finding Myself Anyway). In addition to Hippocampus, Eliason has published reviews in the Brevity blog and at Rain Taxi. To find her reviews of books that you won’t likely find on the New York Times bestsellers list, but should, check out dreliasonwriter.com. She resides in Minneapolis, Minnesota, where she lives with her husband, tending a garden in the summer and a creating a lap for her cat to warm in the winter.