Carol’s Thirty-three Year Undiagnosed Illness
Carol and I were comfortably seated across from one another in my consultation room when I asked, as I do with all my new patients, what her goals were for our work together. She said without missing a beat, “I want to get my life back. I’ve been sick for thirty-three years. That’s half my life. I would like to be a well person and do what healthy people do. I want to be healthy and happy.”
Wow. There it was–precisely what was at stake for her. Just as all my patients say in one form or another. They want their lives back and a chance to reach their full potential–coming to me with all that on the line. It’s my deep privilege to be a part of that.
Carol had been a healthy, busy, highly active Iowa farm wife and mother of two young children before getting sick. She ran the household, raised the kids, cooked all the family meals, and tended her multi-acre garden—eating and preserving everything she grew. And she helped with farm chores, like baling hay. She was a strong woman. Her days were full to the brim but she was energetic and robust and managing it all.
One night her whole life changed. She became suddenly and unexpectedly ill. She described how her “brain went numb,” as she sank into depression, brain fog, diffuse body aches, joint pain, and sleeplessness. She felt like her body was “shutting down.” She became profoundly fatigued with heavy limbs she could not move, and she had sweats. She was unable to get out of bed. She told me it was like having the flu, but way worse.
After three days of overwhelming incapacitation, she went to see her doctor. Her blood work didn’t show anything wrong and she was sent home to rest. When a few more weeks went by and she felt no better, she returned to her doctor. More blood work and still no answers. She was given medication to help her sleep. In the meantime, all of her usual household and farm duties were left undone. Eventually her husband insisted she get up out of bed and carry on. Somehow she was able to force herself to keep going, managing the minimum that was necessary. She was tough in spite of her illness.
Over the years she sought advise from a variety of doctors and healthcare providers. She was diagnosed with a mild case of hemochromatosis (a genetic iron overload syndrome) and hypothyroidism. Treatment for both yielded no improvement in how she felt. But her perplexed doctors were pleased to find something they could diagnose and treat.
After many years of being sick one insightful doc tested her for Lyme disease. The initial screening test (ELISA) was negative. Results from a Lyme specialty lab (IgenX) were equivocal. This was a test called Lyme Western Blot. It looked for evidence of her body having had an immune response to the Lyme organisms (Borrelia burgdorferi) by measuring specific antibodies manufactured by her immune cells. The antibody levels were quantified and reported to help the clinician know if there had been an exposure to Lyme. She tested positive for several different Borrelia antibodies, however the test was labeled as “negative” because the total number of positive antibodies did not meet the strict Lyme reporting criteria put forth by the Center for Disease Control (CDC).
Any significance the positive antibodies may have had was dismissed, so Carol remained undiagnosed and untreated… and devastatingly ill. She now presented herself to me for another opinion, thirty-three years later.
The Power of the Story
For the next couple of hours I listened to her story—every detail. And I was reminded of the power of our stories. My training taught me to let no detail go unnoticed. One of my early medical mentors once said that we must listen to the patient carefully—they will always tell us the diagnosis—before the physical exam, without lab data or high-tech testing. They will always tell us what is wrong with them if we just listen, without interruption, without judgment. We must not dismiss any detail, whether it fits our paradigm or not, whether it makes sense in the moment or not.
It became clear to me as she talked, and as I listened, that the key elements of her story–the telling elements–had been set aside in favor of the more “definitive” and “objective” evidence of her blood tests. That her test results were given precedence over her story. Since her particular test results could not definitively–with absolute certainty–reveal THE ANSWER to the puzzle of her illness–that no one on her care team could BE SURE–she was left stranded without a diagnosis and without treatments that could make her well.
The Creative Committed Mind is Never Certain
The beautiful thing about the human mind is we can think in creative and novel ways. We can hear a story never told before, look at unique sets of data, and combine them to form a meaningful hypothesis about the nature of the problem, leading to action and solutions.
This is our challenge and responsibility as physicians. To wade into uncertainty to make meaning out of our patients’ stories.
The desire to feel certain is human. It’s wired into our brains. It kept our ancestors alive during wildly uncertain times. We want things to stay the same. We want to know for sure before we jump in. As physicians, we want to DO NO HARM.
I get that.
But the only thing that IS certain in medicine–and in life–is that we can’t possibly EVER know ANYTHING for sure.
We have to take risks. We must be brave and commit to an idea and a plan. Understanding that we may not be right.
But we take a chance in the spirit of energizing the search for the solution we seek, for solving a problem–in service to our patients. Knowing that we might be wrong. That we can never be certain.
We must be honest with ourselves about what we do know, discarding nothing for the sake of simplification. Doing our best for the sake of our patients. Taking the plunge and OWNING the risk. Knowing that only the risk of action will lead to solutions.
As I listened to Carol, I thought, “What about her STORY?” Her story, even without conclusive lab data, told me–indeed, screamed at me—all I needed to know to make a diagnosis. To take a risk, even in the face of uncertainty. Even if we choose to set aside the Lyme Western Blot results (though we have half a dozen POSITIVE antibodies to Lyme—this is highly relevant data), we have the power and truth of her story.
It is my duty as a healer to brace myself in the face of uncertainty and, no matter how uncomfortable I feel, take the leap that is needed to make a diagnosis.
To all the while risk being wrong. But in doing my best as her physician, to take that risk all the same.
Carol has Lyme disease with a possible tick-born co-infection, undiagnosed and untreated for thirty-three years. This is my diagnosis. This is my commitment to the diagnosis and to my new patient. I’ll stick with it until proven otherwise. And I won’t give up trying to get closer to the truth.
But can I be CERTAIN?
Can we ever be CERTAIN about ANYTHING?
Do we let a patient remain ill and totally sunk—her energy, wellbeing, hopes, and dreams—for thirty-three years?
What Carol has now—FOR CERTAIN—is me as her partner. I’m committed to walking this path with her. I do not know with certainty what the future holds for her, but I will not forsake her by pretending to be certain—or right—and dismissing her story and important data that hold clues, that suggest what may be going on, that aren’t completely clear, but are meaningful none-the-less.
I want the best possible outcome for her, and I know precisely what’s at stake (she told me right up front: “I want to get my life back.”). As uncomfortable as I am with the uncertain elements of her situation–of the diagnosis and what the future will bring–I will not abandon her. I accept this risk–I accept the truth of uncertainty. I’m all in. I will not forsake her.
Karyn Shanks, MD. The Upside of Our Uncertain Lives. 2017.
Karyn Shanks, MD. How We’re Wired to Go With the Flow. 2017.