This article originally appeared on VICE US.
Patricia Rosebush's patient had vanished. Just an hour earlier, the woman was motionless in bed, unable to speak, eat, drink water, or respond to commands. When Rosebush first saw her, she thought, "Is she even breathing?" Yet now, her bed was empty.
"I was startled," Rosebush remembered. This encounter with the missing woman was in 1986, at the in-patient psychiatry unit at McMaster University in Canada. Rosebush, a neuropsychiatrist, had just unwittingly treated her first patient with catatonia—a strange disorder where people can suddenly become statue-like, losing the ability to move or speak. Based on a few case reports, Rosebush decided to give the woman an injection of the drug lorazepam (which treats anxiety, among other things) and left, not expecting her to be gone when she returned.
As she searched for the woman, she looked in on the unit's main sitting area. There was her patient, sitting, reading a newspaper. The woman said—with an impatience as if she hadn't just been completely immobilized: "I've been waiting for you to come back. I need to talk to you."
Catatonia is a disorder that feels like it belongs to the past—a relic of the days of hysteria or the four humors. The most common symptoms are immobility, staring, mutism, withdrawal, and refusal to eat. Another is called posturing—when people become like living mannequins, and get stuck in unusual poses. Their limbs can take on a "waxy" quality, like the green clay-man Gumby, and be positioned any which way. It has been theorized to be a motor disorder, a “paralysis of will,” a fear syndrome, or a result of the immune system gone awry. Scientists are currently investigating the brains of catatonic people, trying to understand what causes a person to freeze up. The answer is still unknown.
But it’s not some obscure Victorian vestige, Rosebush said. She has now treated hundreds of patients with catatonia; in any psychiatric unit, 7 to 10 percent of patients will have it, and some estimates go as high as 25 percent. Despite how common it can be, though, it often gets misdiagnosed or overlooked entirely, in part because for about a hundred years, catatonia was considered to be a type of schizophrenia—not a distinct syndrome of its own.
Unlike many disorders that we don't understand, catatonia is a remarkable example of one that can be treated, and easily. In a large percentage of catatonic patients, giving a dose of a benzodiazepine, like lorazepam, can make them better—rapidly so, within a few hours—just like Rosebush’s first patient.
But someone with catatonia is stuck with the wrong treatment, it doesn’t take long for complete immobility to lead to medical problems—deep vein thrombosis, pulmonary embolism, dehydration, infection, to name a few. Catatonia has a mortality rate of around 35 percent.
"Catatonic stupor is a terrifying experience, not a gentle oblivion."
It's a terrible outcome for people who could easily be treated. About 70 to 80 percent of people with a rapid onset of catatonia get better on benzodiazepines, sometimes in as quickly as a few hours. Those “who have been immobile, mute, withdrawn, and refusing to eat or drink, enjoy complete release from their 'frozen' state,” Rosebush wrote in 2010.
While scientists figure out the mysteries of catatonia, what may be most important is teaching clinicians how to spot it, so they can try to pull people out of it. When treated properly, catatonic people have been referred to as “Lazarus patients,” for the saint who rose from the dead. Before treatment, "some literally had hospice papers on their bed stands,” Edward Shorter and Max Fink wrote in the book The Madness of Fear: A History of Catatonia. When catatonic people awaken, it's not like people who wake up from a coma—many of them were fully aware and describe being incredibly afraid, or believing they were dead.
“Catatonic stupor is a terrifying experience," Shorter and Fink wrote, "Not a gentle oblivion."
Not moving or talking is one type of catatonia, including not being able to drink or eat. Others with catatonia can have the opposite problem: an increased urge to move. They might constantly clap their hands and dance without music. Some people have a symptom called negativism, where they do the exact opposite of what they’re asked to do.
“For instance, if I would approach someone trying to shake their hand and say hello, they would turn away to the wall and not talk to me,” said Sebastian Walther, a psychiatrist at University Hospital of Psychiatry in Bern, Switzerland, who has treated many catatonic people. “Or it could be much more simple: You ask them to sit down and they stand up.”
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Catatonia can come on fast, but there also can be a build-up of symptoms, said Walther. Rosebush said when she thinks back to her residency, she likely saw catatonic patients all the time: people who weren’t eating, weren’t moving, weren’t talking, or behaving strangely. Catatonia could begin by a person moving slowly, or forming their bodies into peculiar positions that they hold for several minutes—standing around “like a sculpture,” freezing, and then moving again. Sometimes, people report feeling like they have a block, cannot move for a certain amount of time, and then it goes away and they can move again.
When people are immobilized, many will say it's because they were frightened. “Patients’ faces are often filled with fear, and afterward they say they thought a catastrophe had occurred,” Shorter and Fink wrote. “These patients are frequently overwhelmed by fear, dread, and anxiety. They imagine that their house has burned down or that the hussars are coming.” Some people expressed a feeling that they have died and that they can't move, Rosebush said.
A 1913 description of a catatonic patient in a German textbook describes it this way: “Sometimes it seems as though the patient is like a dead camera: He sees everything, hears everything, understands everything and yet is capable of no reaction, of no affective display, and of no action. Even though fully conscious he is mentally paralyzed.”
“Patients are unbelievably frightened of something,” Rosebush said. “Sometimes they can put that into words, sometimes they can’t.”
In 1874, Karl Ludwig Kahlbaum described the various movement symptoms he saw in 26 mentally ill patients, and coined the phrase catatonia in his monograph, Die Katatonie. While he was the first to give it a name, catatonia-like symptoms had been described long before that.
One of Kahlbaum's patients, a 27-year-old man named Benjamin L., had to be dressed and undressed each day, and didn't react to anything, not even pricks from a needle. He was completely immobile: "Sits or stands in one spot...Gaze rigid...upper extremities hang slackly," Kahlbaum wrote. "When sitting, he is the prototype of one of those colossal Egyptian statues: for hours and days holding his upper body upright, forearms upon his thighs, staring rigidly straight ahead. Facial expression . . . empty and cold.”
Kahlbaum felt that catatonia was its own disorder, not married to any specific illness. But two psychologists, Emil Kraepelin, professor of psychiatry in Heidelberg, and later, Eugen Bleuler, professor of psychiatry in Zurich, associated catatonia with schizophrenia. “And this is how it was for about a hundred years,” Walther said.
“Patients are unbelievably frightened of something. Sometimes they can put that into words, sometimes they can’t.”
In fact, the Diagnostic and Statistical Manual of Mental Disorders (DSM) defined catatonia as a subtype of schizophrenia until 2013, when it was acknowledged that catatonia appears alongside many conditions—psychiatric, medical, and neurological. While it can happen in people with schizophrenia, it appears with other mental illnesses too, like depression or bipolar disorder, as well as medical issues like infections or autoimmune disorders.
It's probably one of the reasons we know so little about this condition. Believing that catatonia was linked to schizophrenia “impeded progress in catatonia research for many years,” Walther said. Instead, symptoms of catatonia could be confused as something a patient was doing of their own volition, a behavioral issue, or psychosis. If catatonic symptoms were present, but not paired with schizophrenia, they might be mistaken for other conditions, like encephalopathy or coma.
When medications became widely used, the situation became even more complex. Antipsychotics drugs, which are prescribed for schizophrenia, can also cause movement disorders, and odd movements would often be explained away by the drugs. That obscured the ability for people to notice catatonia, to such an extent that in the 1990s, researchers wondered if catatonia had disappeared in the population entirely. “Clinicians are often confused by catatonia, reframing the signs and symptoms as something else, or missing them altogether,” Walther wrote in a 2019 paper.
In 1990, a case report told the story of Mrs. H, a 45-year old black woman whose catatonia was missed for 24 years. She had 18 psychiatric hospitalizations from the age of 21, and whenever she was in the hospital, she would refuse to eat or follow orders. Between episodes of catatonia, the report said she was a popular and gregarious woman, but when she showed up at the hospital, she "maintained an alert but blank facial expression; her eyes were open but there was no eye contact."
Her previous hospitalizations lasted anywhere from three days to four weeks. She never had any delusions or hallucinations, and antipsychotics didn't help her symptoms. Despite that, instead of recognizing catatonia, her past doctors had thought she was psychotic. It wasn't until she got lorazepam that her catatonia improved.
While antipsychotic drugs are the first line of treatment for schizophrenia, they can make catatonia worse. Benzodiazepines help sudden and severe catatonia, but they can make schizophrenia worse. Even the most severe cases of catatonia can often be treated with either lorazepam or electroconvulsive therapy (ECT)—but those are not treatments that people with schizophrenia often receive.
Catatonia might be most easily treated when it’s done right away. In 1994, Rosebush treated brothers with catatonia. One brother was brought into the hospital with acute catatonia, and was treated quickly and able to talk again. He told Rosebush his brother had developed the same condition five years earlier, and was still in the hospital. They found his brother, but after treating him with lorazepam, he didn’t get better immediately. It took a full year for him to be discharged from the hospital.
“Asking if it's physical or psychiatric is like saying, 'Is it Tuesday or is it raining?”
In her career working with catatonic patients, Rosebush helped develop a scale to determine if a patient has catatonia, based on Kahlbaum’s original description of patients in the 19th century. But even though she's helped guide clinicians to better diagnose it, she thinks of it as a syndrome, not a disease—since we still don’t really know what brings it on. “We only understand what it looks like and maybe what medication it responds to,” she said.
Anthony David, a neuropsychiatrist and director of the University College London’s Institute of Mental Health, said he thinks of catatonia as a problem with the body’s motor system—what guides voluntary movement and control. David said it could also be that something's gone awry with the chemicals in the brain, like a sudden shutting off of a neurotransmitter called dopamine, in certain parts of the brain.
Others have pointed out the similarities between catatonia and “tonic immobility” an animal’s defense strategy in response to fear—like when a possum plays dead. There is a theory that catatonia is an innate, primitive fear response. Rosebush said she finds it intriguing that benzodiazepines help treat anxiety, and also seem to help with catatonia. Another recent theory suspects the immune system may have a role to play, and questions the importance of infection.
It may be that catatonia is several different conditions that look like one, David said. Rosebush has found that those with schizophrenia and catatonia don’t seem to respond as well to lorazepam treatment, a finding others have replicated.
“That makes it quite difficult to group these people together because we're not really sure whether they're actually experiencing the same thing, even though from the outside it looks similar,” Walther said. He is currently conducting brain imaging studies, to try and understand the underlying physiology.
As it is, catatonia dances the fine line between body and mind—is it brought on by fear, anxiety? Or is it a movement disorder, purely mechanical? Does the fear exist to explain away the physiology? Who should treat catatonia: a neurologist? A psychologist? An immunologist? Even after decades of studying it, Rosebush thinks that asking whether catatonia is physical or mental does no good. “Asking if it's physical or psychiatric is like saying, 'Is it Tuesday or is it raining?” she said.
For now, she's focusing on how, unlike other mysterious illnesses described in the DSM, a low dose of a safe drug can make them better.
“What touches me is that most of the cases, they go unrecognized,” Walther agreed. Catatonia is likely still under-diagnosed, likely because education on it is low, and many clinicians may miss the signs, or ascribe them to something else. One study found that doctors diagnosed catatonia in only 2 percent of a group of 139 admitted psychiatric patients, whereas a research team that knew more about it identified catatonia in 18 percent of the same group.
“What touches me is that most of the cases, they go unrecognized."
One patient Walther will never forget had had multiple episodes of catatonia before—but his doctors never figured it out. "They were unaware of the history, and when the person started to have less and less energy, not moving anymore, they eventually referred him to an intensive care unit," Walther said. "They were trying to improve his condition and they didn't recognize that it was catatonia. The person stopped eating. He developed pneumonia because he was not swallowing correctly. All types of further complications occurred just because there was no one who would see that as catatonia.”
It was only by chance that Walther and his colleagues were called for their opinion, and within 10 days of treatment, that patient was able to walk, speak, and eat again. He had previously been in the intensive care unit between six to eight weeks.
“It’s so important because the syndrome is exquisitely responsive,” Rosebush said. “Within a matter of hours patients can simply go from looking almost as if they’re not alive, to getting up and talking. With an intervention, they completely turn around.”
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