Donna’s Blog

Since THE AUTOIMMUNE EPIDEMIC came out, I have heard from thousands of people from every conceivable background who suffer from a wide range of autoimmune diseases. They’ve shared with me their experiences of illness and treatment, their hopes, disappointments, and lessons gleaned. At the heart of each of their stories is often the tale of a patient’s relationship with his or her doctor and how it helped—or hindered—the patient’s journey toward wellness. Their stories, along with the experiences of patients I interviewed while researching THE AUTOIMMUNE EPIDEMIC and my own decade long journey as a patient in the American medical system, have taught me what American patients want – and desperately need – from their doctors.

Patients love to tell doctor stories; the good, the bad, and the unfortunate. Often, those suffering from illness want to tell me stories about the first doctor who really (finally) listened to them; that compassionate healer who went the unexpected extra mile to help solve the mystery of their autoimmune disease. They want to share the tale of the practitioner who gave them a clear message of hope – a conviction that they could be well — which became a mantra that settled somewhere in their psyche and played a part in nudging them toward recovery. But more often the stories they tell me are about doctors who didn’t listen, or didn’t seem to care, or dismissed them as malingerers; practitioners whose obvious condescension still rankles them to this day.

This concern with what makes a good doctor isn’t surprising when you consider recent statistics that 133 million Americans suffer from a chronic disease, be it heart disease, cancer, severe back pain, arthritis, autoimmunity, or a plague of other challenging ailments that derail normal life. These chronically ill patients often traipse from one health care professional to the next in search of answers and relief — a process that can take years. Indeed, the average autoimmune disease patient, of whom there are now 24 million in the United States alone, sees four doctors over four years before receiving a proper diagnosis. This search for a good doctor can be emotionally arduous. Recent surveys conducted by the American Autoimmune Related Diseases Association reveal that 45 percent of patients with diagnosed autoimmune diseases were told that they were hypochondriacs at some point in their medical care. Increasingly, patients who feel they need more than what traditional medicine can offer go “off the reservation,” seeking help from holistic and alternative health care specialists as well.

Whether a patient seeks the help of traditional or alternative/complimentary practitioners (or, as a majority of patients now do, both) all “healer stories” really contain the same key themes. If the good health care practitioner were a recipe, the four integral ingredients would be these:

1) Compassion. Patients know whether health care professionals have it or they don’t. Doctors who express compassion for their patients’ pain and circumstances stand out immediately. I know a well-known transverse myelitis and multiple sclerosis specialist at a major medical institute who, when he diagnoses a patient, feels so deeply for them that he always hands them his cell phone number, because he knows there will be “dark moments” where they will have “sudden, urgent questions” that can’t wait for the next clinic visit. And I have heard his voice crack when he talks about the loss of a young patient he could not save. Another physician revealed the strength of his character when, after diagnosing me with Guillain Barre Syndrome, a disease in which the body becomes increasingly paralyzed degree by steady degree, he sat with me in a small, white exam room at Johns Hopkins, talking with me quietly for an hour-and-a-half, while my mother and husband rushed to arrange admission to the hospital, collected my bags from home and arranged for child care. He stayed with me, he said, because he didn’t want me to wait alone after the devastating news he’d just delivered — even though nurses were rapping on the exam room door and his patient waiting room was near to overflowing, and it no doubt meant he would go home much later than night to his family than he might like. He is a very decent man, a good man, and the numerous patients I know who see him use these words to describe him whenever they mention his name.

On the other hand, there are doctors and practitioners who make it clear that you are taking up too much or their time, or wearing their patience thin with your illness –mentally placing you, perhaps unconsciously, somewhere in the category of the famous Freudian hysterics (especially if you are a woman). They don’t respect their patients. I can’t help but think of the story of one young woman, now president of a large advocacy group for autoimmune disease, who was in her early thirties when she began suffering from severe muscle fatigue and disabling weakness. Her doctor, whom she’d seen eight times, was unable to come up with a diagnosis. “We’ve given you every test known to man but an autopsy,” he said. “Would you like one of those, too?” She was later diagnosed with myasthenia gravis by a doctor who took time to understand the complex portrait her symptoms and lab work presented. I recall, in my own health tribulations, seeing a doctor who, despite my history of severe autoimmune issues, paralysis and other complications, yelled at me in his office: “Yesterday you came in here saying you were nauseous and now today you say you have diarrhea! Make up your mind, which one is it?”

The next day I ended up in the E.R. and was hospitalized. While I was there I was treated by a GI specialist who came into my hospital room on several different occasions at the end of the day and sat down, his briefcase on his lap, to talk to me about pursuing wellness strategies outside the box. The hospital by that hour was growing quiet and dark, he had already seen me earlier in the day during the requisite rounds, and his day was now done. Yet he had enough compassion for a mom with two young children to take time to educate me about how to approach my GI problems more holistically – advice which, over the next two years, would lead to turning around my GI symptoms. Of course, delivering compassion means building time into the patient doctor relationship to allow for that extra, meaningful exchange – a conundrum in a health care climate that has shaved the average doctors’ visit down to a mere matter of minutes. I would bet that a doctor who has been consistently stripped of time has also been stripped of compassion.
The question health care professionals need to ask themselves is this: which type of practitioner would you prefer to see? The one who gives you their cell number or sits with you after a tough diagnosis, or the one who speaks to you disrespectfully or impatiently? Granted, most practitioners fall somewhere in between, but patients search hard and long for the former and never forget them when they are lucky enough to find them. Compassionate doctors emerge as a central figure when patients share their healing stories.

2) A Deep and Growing Fund of Knowledge. Of course compassion alone hardly makes for a good healer. If a health care specialist doesn’t possess a deep fund of knowledge — and the curiosity to constantly keep abreast in their field to extend their acumen — all the compassion they can muster can’t make up for what they just don’t know. One woman consulted three local doctors several times each over eight months; they all missed her multiple sclerosis. She then saw a university hospital specialist who suspected MS in the first visit, ordered a series of tests, and diagnosed her disease that same week. “Why didn’t those other three doctors even know enough to suspect MS?” she asks. Another young woman described suffering from severe thirst, dizziness, fatigue, and a 20-pound weight loss over three weeks, but the doctor she was seeing dismissed her complaints and told her, “You just need to gain some weight. Go have a banana split and you’ll be fine.” A few hours after that appointment, a friend found her in a near-diabetic coma on her sofa and rushed her to the E.R., where she was diagnosed with type 1 diabetes. “How did he miss it given the state I was in?” she asks. These stories become the doctor-who-didn’t-get-it lore that patients so often vent about with each other.

But patients also share positive stories about practitioners who, although they may not have ready-made answers, commit time and energy to solve their patient’s case. One patient suffering from severe fatigue and poor appetite for half a year told me of his relief in finding such a doctor. He had already been to two doctors who “couldn’t find anything” (one of whom handed him antidepressants). A third physician confessed that he, too, was perplexed, but he took a different approach. He put his hand on his patient’s shoulder and reassured him, “I don’t know what’s causing this, but I promise you we’re going to figure this out together.” Likewise, another patient talks about meeting a doctor who surprised and moved her by asking her to “start by telling me about the last time you were well.” This patient confesses, “No one had ever asked me anything like that before.” Indeed, this doctor’s narrative approach to obtaining her patient’s medical history was just the first of many ways in which she showed her commitment to helping this patient toward recovery.

3) Open to Complimentary Approaches. In a health care world in which the majority of patients now use alternative medicine, it’s a given that patients want physicians whose fund of knowledge includes being well-versed in complimentary medicine. Patients seek doctors who are able to offer advice on food as medicine, safe supplements, exercise, stress management, and who are willing to move beyond disease labels to delve into what combination of factors may lead to a patient to falling ill in the first place. But this kind of physician can be tough to find. Hundreds of patients (including many with inflammatory bowel disease, a disease whose course is known to be influenced by diet) have told me that the physician or specialist they see never mentions diet or supplements to them at all. Yet, by working with a nutritionist whom they seek out, or by researching the role of nutrition in their ailments on their own, they are able to help turn their disease around.

When patients find the rare physician who competently blends Western and complimentary approaches they stick with them, and they refer other patients to them as well. One young woman with rheumatoid arthritis told me about her relief in finding a doctor who not only helped her sort out the side effects among her choices of medications, he also emailed her recent groundbreaking studies to convince her to make dietary changes that would improve her health. Patients today take a proactive role in their own wellness journeys — and they view allopathic physicians who rely solely on drugs as being out of touch with the growing data that exists on how lifestyle factors impact one’s well-being. Of course, office visits that allow time for discussions of diet and lifestyle as well as writing prescriptions take longer – and patients are choosing health care practitioners who have built that buffer time into their patient schedule.

4) A Champion of Hope. Patients seek health care specialists who avoid focusing on negative outcomes and referring to diseases as “degenerative” or “progressive,” and who, instead, offer as part of their Rx the conviction that their patient can and will have a hopeful, positive outcome. Indeed, patients love to tell stories about how their practitioners’ encouraging statements of hope and healing, statements that emphasize the miracles the human body is capable of, often become the patient’s own inner affirmation that they can and will be well. One woman’s doctor told her, during a particularly difficult time in her battle with cancer, “You are going to beat this and you are going to live a totally normal life.” This doctor couldn’t know that to be true, but by saying it with conviction, she helped her patient to believe it too and might just have helped to save her patient’s life. At least her patient – ten years later – believes that her doctor’s faith helped to pull her through.

In my own health history, this certainly has been the case. The neurologist who sat beside me those long hours after diagnosing me with Guillain Barre later saw me through a repeat episode of the disease. The second time Guillain Barre strikes (and it is rare for it to strike twice) it is much more damaging. It took me five months to learn to walk unaided again. During this time, several other neurologists at the hospital where I was being treated made it clear that they were dubious that I would ever regain my mobility. I asked my neurologist, “Why are they all warning me to prepare for the worst?” He shook his head. “Don’t listen to that,” he said. “I’m your doctor and I know you. Patients have recovered and been able to walk again after having Guillain Barre twice. I know you. They don’t know you. And I know that if it can be done, if it is possible, then you will do it.” Could he have known, as he said these words, that his reply would stay with me day in, day out, that long, hard summer, as I spent hours in grueling physical therapy, first learning to walk to the door of my bedroom, then finally – five months later – down the steps and out the door?

Health care professionals who offer up compassion, a deep fund of knowledge of both Western and complimentary treatments, and a heartfelt prescription for hope facilitate better patient outcomes. But that’s not the only good news. In my work, I also talk to and hear from numerous doctors and health care practitioners who tell me that when they offer this “recipe” to their patients, their lives as healers become imbued with greater meaning, and their own work life is all the more joyful and rewarding.