On bad days, Barbara Deatherage, 44, is mired so deep in pain that she cannot find any words to explain how she feels.
"Fibro fog days are where you just can't do too much. It's hard when you know these words," Deatherage said, trailing off. "See, I'm losing words here."
Though the language of pain is rich, full of words such as "searing" and "taut" and "agonizing," at the same time it is barren and Deatherage's dilemma is shared by many people. As communicative as humans are, when it comes to pain, they are often at a loss for words.
"At that moment when you're in pain, the felt experience of it just obliterates [everything]," said Elaine Scarry, an English professor at Harvard University and author of "The Body in Pain." "If you had a whiting out of everything except the sheer fact of pain, you're not going to have anything to express in language."
But pain is an important health indicator and, according to the Joint Commission on Accreditation of Healthcare Organizations, it is considered a vital sign. Beyond blood tests or heart rate, medical personnel rely on descriptions of pain to understand what the patient's body is experiencing.
"The reason why we turn to language is because pain is a private experience," said Ephrem Fernandez, a professor of clinical health psychology at the University of Texas at San Antonio. "You invariably rely on a person's self-report to communicate what is really a nonobservable experience."
The Language Barrier
Without an accurate description, a doctor might lose the opportunity to administer the most effective treatment. But these descriptions can be difficult to offer because pain can vary from ailment to ailment, from person to person and even from day to day.
"They're all different kinds of pain. I guess it's hard to put an adjective to," said Deatherage, who suffers from fibromyalgia, a syndrome characterized by chronic pain and sensitivity, and hepatitis C. While she said she wants to be accurate for her doctors, explaining how her migraines hurt leaves out her pain from irritable bowel syndrome and neither of those address her fatigue.
"I guess I would be confused what to say. To try to tell the doctors is hard," Deatherage said.
Scarry believes pain has the power to actively destroy language.
For example, smashing the hand with a hammer might cause someone to scream or curse.
"It's almost watching language backing up to the kind of sounds we make before we learned language, when we could just yelp," Scarry said.
But people in pain may find they are robbed of words because of other people's attitudes.
"When you have a chronic illness, you tend to stop saying things because you feel the people around you don't want to hear it anymore," Deatherage said.
A network of people going through the same thing can help share the burden of finding accurate descriptors for ailments.
"It's kind of like playing charades sometimes, when you're trying to find a way to get to that word," said Deatherage, who runs a fibromyalgia and chronic fatigue support group in Hanson, Mass.
There are some clinical tools that are commonly used to help people describe their pain in a concrete way. Zero-to-10 pain scales let patients rate how much pain they are in, zero indicating no pain and 10 indicating terrible pain. Pictures of faces ranging from smiling to frowning may help patients show doctors how they feel about their pain.
In the early 1970s, Ronald Melzack at McGill University in Montreal developed the watershed McGill Pain Questionnaire (MPQ), a list of descriptive words, such as "itchy," "vicious" and "nauseating," that patients could check off to indicate how much and what kind of pain they were in.
Variations of the MPQ are used in many hospitals to assess pain levels and patients are often glad for the list.
"I do remember going 'oh my god, I can check off a lot of these,'" said Deatherage, after she received a list of pain words at a doctor's office.
Some descriptors have a direct relationship to bodily ailments and can assist doctors who need to make a diagnosis, said Dr. Carol Warfield, a professor of anesthesiology at Harvard Medical School.
Tingling could indicate nerve pain, while cramps and aching might be related to the internal organs and cold sensations could indicate something wrong with the sympathetic nervous system.
Talking It Through
But the pain lexicon is always changing. The University of Texas' Fernandez has done some research to refine the MPQ, omitting some words that could be ambiguous, redundant, or less germane to pain, and could be potential hazards in a clinical setting. For example, Fernandez found that the word "numb" connoted cold sensations to some and a dull feeling to others.
Consolidating the pain vocabulary into 36 descriptors showed Fernandez how economical and precise the language of pain could be. And, particularly for more commonplace types of pain -- bone fractures, dental pain and joint pain -- many people draw from a similar pool of descriptors.
"But as the whole experience of pain departs from the normal domain, words become more unique," Fernandez said, citing patient use of metaphor, literature and art to aid their descriptions. "That's when it stretches the imagination."
A patient once described pain to Fernandez as "someone reaching into your stomach and ripping out your organs." A cancer patient said his pain was "a rotten curse, like a hidden enemy I can't figure out."
Other common metaphors include the feeling of an elephant sitting on your chest (heart attack) or the feeling of a head about to explode (sinus pressure.)
Scarry pointed out that there are few literary representations of pain, partially because of how difficult it can be to portray. Some works that deal accurately with pain include "Philoctetes" by Greek playwright Sophocles about a man with an injured foot and Ingmar Bergman's film "Cries and Whispers" about a cancer patient.
Art may do a better job of depicting pain. Many of the Mexican painter Frida Kahlo's paintings were influenced by the physical pain she lived with throughout her life due to the injuries she suffered in a bus accident when she was 18.
Dr. Joseph Shurman, chairman of the pain committee at Scripps Hospital in La Jolla, Calif., described a successful program at the hospital in which patients are encouraged to represent their pain as a drawing and write what that picture means to them. Patients have depicted knives going through their chests, crying every night and distress that they cannot go skiing with their family.
Pain remains inherently difficult to describe because of its subjective nature. This difficulty can be compounded by a person's verbal ability, as well as language and cultural differences.
For Deatherage, the language barrier is still in place.
"I was trying to think how to explain this," she said. "But I guess I can't."