Dr. James (Jim) Whitlock, a neurologist, and Ann McColl met at a writers’ workshop in Maine in 2022 and discovered a shared interest: patients with complex conditions and their journeys in the medical system. Dr. Whitlock’s practice focused on the rehabilitation of individuals with severe traumatic brain injuries. Attorney McColl had been a patient with a debilitating spinal condition and was ultimately helped by a neurosurgeon. A year after her surgery and about a year after his retirement from practice, they began reflecting together on their medical experiences.
Ann: Jim, I’m glad to have the opportunity to discuss my experience with you. I accumulated several diagnoses over my medical journey, including chronic fatigue syndrome (CFS)/myalgic encephalomyelitis (ME), orthostatic intolerance, and craniocervical instability (CCI). My story has a happy ending because the diagnosis of CCI led to pioneering surgery to relieve brainstem compression. It has now been a year since my cervical cranial fusion, and I am remarkably better. It feels like a miracle.
Jim: I think it IS a miracle! Craniocervical instability is not something I would have imagined being confused with CFS/ME before hearing your story. It is even more difficult to imagine you finding your way to a successful surgical solution! This story is a testament to your determination, resourcefulness, and courage.
Ann: Thanks! The connection between mechanical structures and viral-like symptoms is not yet well understood. This meant that the medical specialists I saw had very different perspectives. Given that I met specific criteria for myalgic encephalomyelitis while also exhibiting symptoms of cervical cranial instability, my journey became particularly unique. However, I expect there are many similarities among patients with debilitating, difficult-to-diagnose conditions. I’m interested in your ideas on improving the medical system.
I had seen multiple doctors, asked a lot of questions, and had a collection of symptoms that got progressively worse. I often felt like, instead of being a person dealing with difficult symptoms, I was perceived as a “difficult patient.” Looking back, I realize how much it would have mattered to me for my doctors and other medical professionals to express empathy. I was devastated to leave the non-profit I led and co-founded. I felt increasingly isolated as I did not have the energy to connect with people. Instead of receiving empathy, I sensed that some doctors were skeptical of my descriptions and that I was a bother. And sometimes, the doctors outright blamed me for my conditions.
Jim: Sad to hear, but easy to imagine. I have known very few physicians who I thought lacked empathy. But I’ve known quite a few that had difficulty showing it. I think that cultural and systemic factors can dampen expressions of empathy. By “systemic,” I’m thinking about clinicians reacting to time and financial pressures, or doubts about the ability to get the necessary lab tests, procedures, or therapies for the patient. By “cultural,” I’m thinking of the perceived importance of radiating competence, certainty, and coolness under pressure within an environment that may lack collegiality and mutual support. And then there are a host of possible maladaptive reactions to the stresses of the profession, such as depression, sleep disorders, substance use, and difficulties in intimate relationships. Being a clinical caregiver guarantees exposure to guilt, error, second-guessing, doubt, uncertainty, and the suffering of others. In these times, there is also a fair chance of exposure to hostility and threat. There are healthy and unhealthy ways of dealing with each of these things.
Ann: That is very helpful to hear. In the power dynamic between a physician and patient, it is easy for the patient to just be angry at the doctor and the system and not recognize all the challenges confronting the doctor. I also believe there are ways we can improve these interactions. I understand that you developed a program to cultivate increased clinical staff empathy. Do you think it helped?
Jim: I created a rehab challenge program designed to give clinical staff a taste of the challenges experienced by our inpatients. Elements of the program ranged from consuming modified meals (pureed food and honey-thick liquids) to spending twenty-four hours as a hospital inpatient with simulated stroke involving paralysis and loss of speech. A group of us began piloting the program, but administrative concerns about lost staff productivity (from using work time to participate in the exercises) ended the experiment before anyone completed the entire set of challenges. Still, those of us who participated in the pilot were surprised by how easy it was to improve our clinical sensitivity.
Ann: Didn’t you also do something with providing an immersive experience in military culture? What was the purpose of that program?
Jim: When I began seeing veterans of Iraq and Afghanistan at the VA, I was troubled by my lack of understanding of all things military – language, culture, training, equipment, everything. Someone would describe being “blown up” while in the turret of a Humvee, causing them to drop into the vehicle, and I would wonder “How bad could that be?” I asked a retired Lt. Col. neighbor for ideas to remedy my ignorance. I discovered that, like me, 85 percent of VA clinicians had no history of military service. We ended up developing a program, jointly between the Army National Guard and VA, to immerse VA clinicians in a set of field simulations (convoy, firearms, battle dress, med-evac, and much more) designed to provide an unforgettable experience. Formal surveys of participants six months after each of the three annual events suggested almost universal improvement in communication between clinicians and veterans. Myself included! Among other things, I learned that being “blown up” in a turret could mean being thrown against its steel rim and wall while being slammed by an 85-pound machine gun, rendered unconscious while fellow occupants were maimed or killed by a blast that completely destroyed the vehicle. [That’s “how bad” that could be.]
Ann: You’ve provided some inspiring examples of how medical professionals can better relate to their patients’ symptoms. For a part of my diagnosis, I took a cardiopulmonary exercise test (CPET). The results showed that I had extremely low energy (my body was not creating aerobic energy as it should). Based on my VO2 max (the maximum amount of oxygen that can be utilized during exercise), the report identified activities that would be within my range of metabolic exertion, including “bathing while sitting” or “lying quietly watching television.” Brushing my teeth took more energy than I could sustain. “Walking around a workplace gathering things to prepare to leave” took more than twice as much energy as I could sustain. Perhaps a sensitivity project could require participants to take a CPET but then be limited for 24 hours to the activities that someone with low capacity, like me, could sustain. A part of the exercise could be choosing to spend your energy with this condition. Will you shower today or talk on the phone for 15 minutes? Will you lie down with the camera off for the Zoom meeting, or will you sit in your chair with the camera on to seem more professional? Will you ask someone to make your lunch for you so that you can use that amount of energy to respond to emails?
Jim: I have recently been thinking that we would probably benefit from knowing our VO2 max/exercise tolerance. Though I understand that it is not a pleasant test, it provides a robust and thoroughly studied index of cardiopulmonary fitness. It probably would not be too difficult to develop an app that would give a person an indication of their energy budget for the day based upon profiles of persons with different disorders that severely limit capacity for exertion.
Ann: For someone with a condition like CFS, there is another challenge: symptoms come and go. When I saw specialists in CFS, they knew to ask me: “What does a good day look like for you? What does a bad day look like for you? Do you have that symptom all of the time, frequently, some of the time, or rarely?”
Jim: You make a good point. With all of the variability in things that influence our physiology (like metabolic state, hormones, sleep, emotions, pain, thought, ambient temperature, and even barometric pressure), there should be no surprise that symptoms and signs of disease should fluctuate.
Ann: How could medical practice change to better incorporate this knowledge instead of the responses I got from some physicians who seemed annoyed at me for mentioning symptoms that I was not experiencing at the time of the visit?
Jim: I think that what you may have been experiencing was the stress upon first identifying the “chief complaint” that provides a focal point for applying the structure of the encounter. A panoply of additional symptoms can be incorporated into the subsequent “history” (main plot) and later the “review of systems” (symptoms or signs of disorder assessed by body system; lungs, heart, gut, etc.).
I note that medical offices increasingly use patient forms to solicit symptom information that normally is entered into the “review of systems” part of the medical record. This is a good idea as long as it isn’t just done once and then treated as if that information will never change!
Clinical instructors of medical students can help model positive responses to a new patient who presents with a “laundry list” of complaints without an easily identified “chief” complaint. I think that it is fine to enter “multiple” or “can’t identify” under chief complaint in a record and then get on with the “history of present illness.”
Ann: Visits to many physicians’ offices made me think of how easy it might be to make them more comfortable for patients with debilitating conditions. At one specialized clinic I attended, they had reclining chairs in the waiting room for patients. When the doctor entered the examination room, he asked me if I would like the lights turned down. I did. He also had a small stool tucked under a typical medical office chair and asked me if I would like to put my feet up. I did. Given how accommodating he was, I asked him if it would be OK for me to close my eyes when he was spending time leafing through the reports. He said, “Of course. Please do anything that would make you more comfortable.” The only part of this that would take up resources is the chairs, and perhaps that could be solved by just letting patients rest in their cars until their appointments. Does this seem doable to you?
Jim: This issue has come up in my practice in the past. Some fixes can be very easy (lighting, noise control, privacy fixes). The more expensive accommodations may take more strategic analysis (depending on who is being asked to pay how much!) I think that a good place to start would be an ongoing survey of patients, structured in a way that invites rating of environmental variables known to affect comfort/sense of security – lighting, sound, decor, seating, temperature, privacy, accessibility, cleanliness, bathroom functionality, and helpfulness of office or clinic staff. This is especially important before and after any major change in staff or setting. I also think it is important to seek out a source of credible and medically relevant education for yourself and your staff if you intend to provide care for members of different cultures.
Ann: Here’s an issue I can appreciate may require more of a systems response. In most of the medical practices where I was seen, the doctor had at most fifteen minutes with me. Oftentimes, it was less. A nurse would ask me symptoms, and the physician would work from that list. The problem was that I had so many symptoms; fifteen minutes wouldn’t even get through my list. Most times, the doctor stopped in the list once there was a symptom she could address.
Jim: There is a big difference between seeing someone in follow-up for a blood pressure check versus a chronic neurological condition of undetermined origin. Fifteen minutes might be more than enough for the BP follow-up but for the other? I can’t imagine.
A physician always has the option to re-schedule for a longer interval if they encounter an issue that can’t be addressed without completely breaking their schedule. If a person is in a practice that is so rigid that such changes cannot be accommodated, I would recommend (for their mental health as well as the quality of their care) that they look into alternate venues.
Ann: So far, we’ve discussed changes for doctors or medical practices. From your perspective, what could a patient do to address being seen as a “difficult patient”?
Jim: I think a person who has been through more than two unhelpful clinical encounters might introduce themselves at the next visit as someone who is getting the impression that they present an “unwelcome challenge” to previous physicians. Encapsulate why you suspect this within a short bio highlighting something you enjoyed about your life (pre-symptoms) that has been lost. Then ask the physician if they have ever struggled to diagnose a condition they were convinced was not “psychic” in origin? Then ask what they did when they couldn’t figure it out.
I have found that investing time in exploring “personal/social history” – relationships, habits, leisure pursuits, employment, military service, religion, and education – leads to discoveries that transform a “case” into a “person.” I also think it can sometimes be helpful for a physician to share personal information. I think that this might transform a (scary) “doctor” into a “person.” As a friend of mine recently stated, “A difficult journey is always easier if shared with another person.”
Ann: In some respects, these patient-physician relationship issues seem as old as the practice itself. On the other hand, there are changes in the system — pressures of insurance, pharmaceutical influences, regulations, and so on that affect the relationship. What gives you hope?
Jim: During several years before retirement, I had the privilege of mentoring family practice residents and third-year medical students. I have been surprised and delighted with the sensitivity, knowledge, and holistic awareness that most of these students show. They give me hope.
Ann: My symptoms crossed lots of medical specialties – neurology, endocrinology, gastroenterology, internal medicine – so it was hard to understand the overall condition being addressed by any one physician.
Jim: Early in my post-medical school training, I was exposed to general medicine and several different disciplines. During this time, I was completely comfortable moonlighting as the only MD at a community health center – seeing babies with earaches, women with menstrual problems, people with lacerations, and sprained ankles. I was comfortable with various skills you’d expect to find in what was once called a “general practitioner.” As my training became more specialized, the lens within which I viewed clinical issues narrowed greatly. I suspect that the loss of the “big picture” could have affected my approach to poorly defined, vague symptoms, symptoms that “could be anything.” At the very least, it probably created a bias toward viewing symptoms as neurological, and then, if they didn’t fit, thinking about hormonal (endocrine), systemic illness, psychogenic, or simply unknown causes.
Ann: I usually found it delicate to raise information I would find online about my conditions. I get it that physicians don’t want patients “playing doctor,” but a lot of information circulates in the patient community. While some may not be accurate, I found in groups like Health Rising or Phoenix Rising that they kept up with medical conferences and the latest research. How can we establish a relationship where patients are seen as active participants in their treatment plans?
Jim: This surprises me. I remember the fuss in clinics and medical literature thirty years ago, fueled by the rapid growth of medical information on the Internet. Physicians feared there would be much wasted time trying to resolve confusion caused by low-quality information brought into the clinic by patients. But to me, it seems that such fears turned out to be unfounded. I think (and I’m not alone) that it is good for people to be researching their own conditions. It shows “investment” and motivation. In my work with medical students and residents over the past ten years, I get the impression that they are very much at ease with patients who do their research.
I wonder if some of the clinical discomfort you encountered had more to do with the clinical subject matter (CFS/ME). In my mind, this has been an area plagued by vagueness and several published failures to identify its pathology. It feels that its validity as a distinct clinical entity has only found widespread acceptance within the last decade. Maybe there hasn’t been enough time yet for everyone in the clinical community to have read the memo!
Ann: This is close to another issue of blaming the patient for her condition. One doctor told me that my problems were all related to poor posture. I didn’t believe this to be true, but it was unnecessary and hurtful. And then the questions around stress. I assume it is important in diagnosis to know about stress in the patient’s life. But depending on how it is asked and the patient’s reactions, it also can feel like the physician sees the patient as responsible for their situation because of poorly managed stress.
Jim: This is a fraught area! It would be good if physicians could ask potentially sensitive questions how they want to be asked. Sometimes, an even bigger problem is just skipping pertinent but potentially sensitive questions. This is an area where interviewing techniques can be taught, and I believe contemporary medical education is giving this more attention than when I was in school.
Ann: And here’s a surprising one: doctors weren’t just dismissive of alternative care—they were dismissive of other medical practices.
The neurologist says that the neurosurgeon is a carpenter who will see surgery as the only answer.
The neurosurgeon says the neurologist is only helpful if you want a handful of prescriptions.
The internal medicine physician says I don’t know the infectious disease specialist and the tests are not a part of accepted medical practices.
The infectious disease specialist says internal medicine physicians are twenty years behind in understanding viral-based chronic conditions.
This was frustrating. I needed to see all of these doctors, and instead of having a health team, I had warring parts.
Jim: Hard to know what to say about this one. It’s pretty much symptomatic of the hyper-specialized world of American medicine. There can be lags between long-accepted general knowledge in one specialty and what seems completely unknown in another. And then this can change overnight with the publication of one giant multi-center study!
Ann: It would be much better if a physician were willing to say, “I don’t have the answer”—and better yet, “but I will help you find it.” I have had doctors tell me nothing was wrong with me when the battery of tests was negative. One doctor referred me to a therapist. And I have to say that I had the sense that as an older, white woman, I was easily being profiled as maybe a hypochondriac or someone with depression or anxiety.
Jim: I completely agree with admitting that I “don’t know” when that’s true. And I also concur with helping the patient find a solution, even though it might be labor-intensive. But it can also lead to rewarding discoveries, a leap forward in personal new learning, and the satisfaction of actually doing what you thought you’d be doing when you signed up for the job!
For better or worse, all of us – patients and doctors – have our ways of dealing with uncertainty. Sometimes, we assert certainty where there is none. Sometimes, we use arrogance or hubris. And then there is straight denial – (“No way that you could have anything affecting your brain stem. It’s your posture! Just look at how you’re sitting!”) or poly-Annish denial – (“I’m sure that with time, this will all go away or a cure will come along.”). I prefer the “I don’t know what’s causing this, but let’s work on finding out” approach.
Ann: A related issue was how physicians reacted to alternative care – functional medicine, acupuncture, diet, supplements, etc. And really, it is a long list: patients get desperate for answers. While it would be great to have a physician who incorporated these into my plan, I would have been fine with just acknowledging that I might be searching in these areas as well. What wasn’t helpful was when doctors just said, “That’s a waste of money” or “There’s no research to support the use of that option.” Patients know that CFS/ME and similar conditions have been overlooked for decades in research funding, so it is no surprise to us that there isn’t research to identify effective symptom relief (not to mention cures).
Jim: This is such a complicated area! To me, it represents a sort of nexus where several factors collide. “Mature” physicians (especially those over about 50?) have relatively little formal exposure to alternative care. Younger clinicians have much more exposure and positive views about nutrition, health maintenance, and practices that fall within alternative care. The fact that our culture has chosen an industrialized approach to health care that rewards the dispensation of expensive treatments to those with disease shortchanges more holistic, “whole health” options that aim to prevent disease or optimize the safety of therapies (e.g., using nutrition, herbal supplements, and physical practices instead of a dangerously toxic pharmaceutical to treat a condition).
My work with adolescents and young adults with severe traumatic brain injury connected me with many parents whose desperation for a cure led to the pursuit of expensive treatments with neither science nor rational theory to back them up. My approach to this issue was generally to let it be unless I was directly asked for my opinion. If I suspected a special risk of the proposed treatment (e.g., going to Mexico for an injection of stem cells into the spine), I would share my concerns.
There are a growing number of well-studied botanical and natural treatments. But much of the literature on medical botanicals has been subject to very inadequate study designs. The studies showing whether or not a substance can be therapeutic would be very expensive. Because plants cannot be patented, and the market allows virtually unregulated sale of supplements of all types, there is little financial incentive for funding the needed studies. Meanwhile, much less expensive studies, often involving mice, wind up being used to promote herbal treatments for Lou Gehrig’s Disease and Alzheimer’s. Unfortunately, attempts to translate rodent studies into human treatments have had a disappointing history.
Ann: Since your retirement this past year, I wonder what you have been thinking about the health care system overall?
Jim: I would rather live in a society that makes “avoidance of health care” a priority. If we lived in a society that focused on applying common sense and reverence for life to its systems of nutrition, education, livelihood, and social justice, we wouldn’t need much of a health care system.
Ann McColl is a patient advocate. James Whitlock is a neurologist.