I was walking down the hall at work on a very ordinary day in December. I had sudden onset of excruciating right shoulder, neck, and upper arm pain. For the first time in my life, the "...if 10 is the worst pain you can imagine" finally had meaning. It took my breath and brought me to tears. I took the Tylox I had been given after childbirth (two years ago) with little relief. By the following evening, I was markedly weak in my (dominant) right arm abduction and external rotation. I couldn't even lift a fork to my mouth righthanded without using my left hand to prop up my right elbow. The next 48 hrs were a whirlwind: emails, calls, and pages to my internist (I am usually a once a year-ish whether I need it or not patient), a possible diagnosis of multiple sclerosis, MRIs of my brain, spinal cord, shoulder, appts with ortho, neuro, and ultimately neuromuscular, including the test that provided a diagnosis: an EMG/NCS. The diagnosis was something rare called Parsonage-Turner Syndrome. I had never heard of it before (which is a very bad feeling as a doctor).
So, what have I learned from this experience of being on the wrong side of the stethoscope? A lot that I am still struggling to put into words and a lot worth sharing.
First, no matter how exciting a case is, how rare, how great a learning opportunity for you, etc, you MUST NOT say this or show your glee in front of the patient. I know such excitement can be hard to contain as a newbie medical student or doctor. I, in fact, have a very experienced internist who nonetheless said "Isn't this cool?" to me during my annual appt on multiple occasions once the diagnosis had been established. As a doctor, I know what she meant. I do recall my days in general internal medicine, when I thought I might fall over dead before the end of clinic if I had to fiddle with the dose of one more antihypertensive. I KNOW what it's like to need a good case to spice up the day. I KNOW this was an awesome medical mystery with a rare diagnosis and ultimately a good long-term prognosis. What could be better, right? But the bottom line is that I am still markedly weak, now 4 months later. I still can't pour milk for my kids from a gallon jug, hold my 2 yr old in my right arm, or lift my work bag right-handed out of the passenger seat when I get out of the car. If I were, for example, an orthopedic surgeon, my career would be over or at least on hold for probably a year or more. It has been life-changing for me, and not in a good way. So, yeah, it's cool for the doctor. Yeah, it's a great case to present (and yeah, I agreed to suffer the indignity of being presented as a case in a conference I used to attend showcasing rare diagnoses at my former residency program, at the hospital where I am still on faculty). But, as the patient, it was decidedly NOT cool. I cringe to think about all the times I presented patients on rounds or in conferences with what I'm sure was obvious excitement over this "great case". Patients, please forgive me.
Second, a little kindness goes a long way when you're in a medical crisis. When I had my first C-spine MRI without contrast, it had motion artifact but was read as potentially consistent with demyelination. As I lay there alone on the MRI table having my repeat C-spine MRI and brain MRI with contrast to look for MS and other badness on a Thursday afternoon, I had a lot of time to worry and grieve for the normal life that seemed to be receding into the past very quickly. When the tech, whom I knew could spot an MS plaque or a met on those MRIs as well as any radiology resident, came in afterwards, I begged her to tell me if she had seen anything bad. She told me that she wasn't authorized to give me any information and that I should be able to get the report in a day or so. I knew that, of course, as a doctor. But, as a patient, I couldn't bear another moment of waiting. My eyes welled up with tears as I went to leave. She hesitated a moment, then put a hand on my shoulder, looked right in my eyes, and said, "Dr. Tempeh, you have a WONDERFUL weekend." It was her code to tell me that things looked ok to her eye. I remember it as one of the greatest acts of kindness I have ever experienced.
Third, it is a really worthwhile and eye-opening question to ask a patient how a medical condition is impacting her life. The first and only doctor to ask me that to date (and I saw several along the way) was actually the neuromuscular specialist. I think that question got him the most accurate picture of the extent of the neurological impairment--I told him that I could no longer use a pitcher of water to rinse my kids' hair in the tub because I was too weak to lift it, that I had quit blowdrying my hair because I could no longer do it right-handed and it turned out weird if I did it left-handed, and that I had quit leading a certain conference because I couldn't hold my right arm above shoulder height for more than a minute or two to write on the dry-erase board. It didn't take him long to ask or for me to answer, but it felt much more "real" than his assessment of my strength through a standard neuro exam, even though the neuro exam ultimately showed the same. I didn't realize how frustrated I felt by these losses until I had a chance to reflect on them and share them with a doctor who showed an interest. And the sharing was therapeutic for me in and of itself.
Finally, validate your patients. As an internal medicine resident, I was never good at taking care of the patients with fibromyalgia, chronic fatigue syndrome, irritable bowel syndrome. I had always been taught that the best way to approach these patients is to validate their symptoms--telling them "I know that you are in real pain," etc. I couldn't ever do that, or not very well anyway. In my heart, I wasn't even sure these were real diseases. I have to tell you that although I have never been eager to hear my name and the word "disability" in the same sentence and that I still hope never to take advantage of the disability policy I have been paying for since residency (which you should get by the way), it was a relief when the neuromuscular specialist said after examining me and doing my EMG/NCS, "You have a real disability. This is something called Parsonage Turner Syndrome." It all happened so quickly, the development of weakness literally over the course of hours, to the extent that I struggled to wash my own face and dress myself. For days as the diagnostic workup went on, I vacillated wildly between being convinced that I had something devastating--a demyelinating disorder, brain metastases, something--and that I, a previously healthy person, had for some reason actually gone crazy. Just hearing from someone in a position of medical authority that I was not crazy--that this was real and had a name even--inspired my total gratitude. I wish I could go back and have a do-over now with all of those patients. I could have done so much better for them.
Humility is hard-won.