It was midnight in the emergency department of my hospital, and the chief resident was on a roll. Clad in green scrubs — two sizes too small for his body, they emphasized his muscular physique — he dashed between the ambulance bay and the critical care rooms.
“Wen!” he barked at me, the medical intern. “Come over here to do the ‘rule-out-heart-attack’ in 3.” Two medical students grabbed their notepads and followed the chief resident and me into the room.
The patient did not look as if he were having a heart attack. Dressed in a tailored suit, a young man with a neat ponytail sat in bed, texting on his BlackBerry. The nurse’s note said the 31-year- old was having chest pain. His vital signs and electrocardiogram were normal.
“Good evening!” boomed the chief. We formed an imposing circle around the stretcher. “How are you doing?”
“I’m f-f-f-f-ine,” the young man said. He looked up at us. “Call me J-J . . . J-J-J-J . . . ”
The chief glanced over my shoulder at his chart. “James, right? Do you still have chest pain?”
I dutifully wrote down that the patient appeared in no obvious distress and was breathing normally. But James seemed distressed about something. “N-N-N . . . ” he stammered, his eyes looking around the room until they settled resolutely on the ground. His face was red with effort. I gave him an encouraging smile.
“N-N-No, I’m g-g-good,” he said.
The chief headed for the door. “Talk to him; I’ll put in for labs and a chest X-ray,” he called out as he left the room. “Oh, and make sure to say things sloooowly so he understands.”
By the look on James’s face, I could tell that he understood just fine. I did, too. I closed the door. “I’m so sorry,” I said. “Let’s start over. My name is Leana. I’m your doctor. I’m also a person who stutters.”
I wasn’t always open about being a person who stutters. In fact, it took me 22 years to admit to myself that I stuttered and needed treatment for it. From an early age, I knew that I had trouble getting out my words, but after seeing classmates bully other kids for this, I vowed never to let my disfluency show. I became a covert stutterer, hiding my disability by using such tricks as avoiding certain words and situations. I could never ask for “water,” only “a drink.” “Pen” became “something to write with.” Once, when giving a talk on the Roman Empire in fourth grade, I was so afraid of stuttering on the word “Roman” that I jabbed a pencil into my thigh so that I would be released from class to see the school nurse. The little piece of lead is still there today.
By the time I went to college, I had become so proficient at hiding my stuttering that I rarely revealed it in public. By medical school, it was more difficult to hide. It seemed a cruel irony that I had trouble with the word “doctor” and had to come up with other ways to address my attending physicians. During an infectious-disease lecture, I was called on to answer a question. With the spotlight on, I could not get out the word for a particular disease cause by parasitic worms — “schistosomiasis” — and there was no appropriate substitute. “Sch-sch-sch,” the professor imitated, shaking his head. “Why don’t you come back when you learn to speak?” His sharp words, like the broken piece of pencil lead, will always stay with me.
As I sat with James in the ER bay, I thought back to classmates years ago who had laughed when I stuttered. “I’m not stupid,” James said. He finally looked me in the eyes, and I could see tears gathering. “I just have trouble getting out w-w-w-words sometimes.” He told me he was a lawyer. He always knew he had a problem with his speech, but, like me, he was able to hide his stuttering most of the time.
Two weeks before coming to the ER, James had been promoted to a position with more demands for communication with clients. The harder he tried to speak fluently, the more struggled his speech became. During a dinner with clients when he began to stutter on every other word, he began sweating and breathing quickly. His colleagues asked if he was having chest pain, and when he nodded, they called for an ambulance. That is how he ended up sitting on a hospital bed struggling to speak with me.
James didn’t need blood work or an X-ray, I realized. He needed someone to listen to him. His providers didn’t have to be experts on speech disorders, but they needed to have some basic understanding of how to recognize and treat patients who stutter. It’s a disorder that affects at least 3 million Americans, or 1 percent of the population.
While medical school curricula are replete with lectures on “one-in-a-million” diseases, little attention is devoted to teaching future doctors how to care for people with speech disorders or other disabilities.
Yet, according to the 2010 census, nearly 20 percent of Americans — representing 57 million adults and 5.2 million children — have a disability.
As we talked, I told James what it was like to go through medical training as a person who stutters and how I saw firsthand the ignorance and prejudice some health-care providers harbor toward patients with disabilities. I remember an attending physician berating me for testing someone with pelvic pain for sexually transmitted diseases. The patient was “wheelchair-bound”; surely, she couldn’t be sexually active, the attending said. On the wards, there were frequent jabs about people disabled from chronic pain: Why couldn’t they just work like everyone else?
As with James, patients may have unnecessary tests ordered because of their disability. Doctors and nurses label this approach “veterinary medicine.” In other words, just as for an animal that can’t speak for itself, they order tests rather than talk to patients who are perceived as being “slow” or “difficult.” These patients often receive inadequate care: Either doctors can’t see past the disability and attribute all problems to it, or they fail to acknowledge the true impact of these impairments.
Numerous reports have documented that people with disabilities have poorer health and receive inferior health care. For instance, people with disabilities are more likely to be obese, inactive and smokers, and yet they receive less information on screening and other preventive services.
As I saw blatant examples of unequal and insensitive care to patients with disabilities, I felt anger, then shame and fear. I knew that the right thing to do was to speak up, but I was so afraid that I would be exposing myself and my own disability. Throughout medical training, my greatest fear was that my supervisors would find out about my stuttering and deem me unfit to fulfill my dream of becoming a doctor. There were few doctors with disabilities to serve as role models; though one or two of my professors stuttered, they never talked about it. I don’t recall anyone else, not a colleague or superior, who was open about having a disability.
James’s blood tests and X-ray came back: The results were normal. I went to give him the good news, but he didn’t seem relieved.
“I know it’s not a heart attack,” he said. “But what do I do next time this happens?”
I told James about how speech therapy has helped me address feelings of fear and shame about my disability. Becoming totally fluent isn’t the goal of speech therapy — I continue to stutter from time to time. The goal is to say what we want to say without avoiding words or situations.
In fact, it took me until the end of medical school to accept my own identity as a person who stutters and to be open about it with others. Now, as an attending, I lecture to health professionals and students about my experiences. I provide advice for how to treat patients with speech impediments. Let them finish their sentences, for example. Look at them in the eye, nod and be encouraging. And speak up when you see someone receiving inadequate care because of their stuttering or other disability.
At the end of my ER shift that night, I asked the chief resident if we could have a word. We walked to an empty trauma bay. My hands were shaking and I could hear my own stutter return as I began to explain what was actually going on with James, and how Stan’s comments hurt him — and me.
There was a long silence when I finished. “Do you have his number?” he asked me. I did. To my surprise, he took the number and called James to apologize. He then asked me to put together a seminar on disabilities for other trainees in our hospital. In the seminar’s first session, medical students and residents began by discussing how they had also witnessed inappropriate behavior toward people with disabilities but were too afraid to speak up.
I invited James to be the inaugural guest lecturer in a series of small-group, patient-led rounds. I’ve kept in touch with him since then. Six years later, he is a partner at his law firm and speaks openly about being a lawyer who stutters. He, too, likes to tell the story of how a simple case of chest pain led him to accept his identity and become a mentor and advocate.
Wen is an emergency physician at George Washington University and author of “When Doctors Don’t Listen: How to Avoid Misdiagnoses and Unnecessary Tests.” This story was excerpted from the Narrative Matters section of Health Affairs magazine.