Mix of Broad and Specific Language May Help in Talking About MS

Using a mix of broad diagnostic terms and more disease-specific ones may help physicians and patients to better communicate symptoms of autoimmune disorders like multiple sclerosis (MS) that are not always obvious or easy to explain, a study reported.

The study, “Using autoimmune strategically: Diagnostic lumping, splitting, and the experience of illness,” was published in the journal Social Science & Medicine.

People with chronic autoimmune diseases often struggle to convey the nature and severity of ever-changing or ambiguous symptoms to their doctors, family members, and friends. As a result, these symptoms can go undiagnosed — or patients misdiagnosed — sometimes, for considerable periods of time.

A study led by Kelly Joyce, PhD, a professor at the College of Arts and Sciences at Drexel University, together with Melanie Jeske, a former graduate student at Drexel, showed that using broad terms like “autoimmune disease” may help patients struggling to describe their often-inconsistent experiences to healthcare professionals and those close to them.

Joyce and Jeske conducted in-depth interviews with 45 people, ages 20 to 67, who had been diagnosed with autoimmune diseases that include MS, lupus, and rheumatoid arthritis.

They found all of them, regardless of age, sex, or disease, tended to use broad terms like “autoimmune,” in addition to disease-specific ones to describe their condition. Largely, they did so to make it easier for family members and friends to understand.

“Although friends and families may not understand the precise mechanisms of lupus or rheumatoid arthritis, for example, they could understand the general autoimmune process in which the body’s immune systems attacks healthy tissue and cells,” Joyce, who is also a member of the Center for Science, Technology & Society, said in a Drexel news story.

Using broader terms to describe a particular disorder also seemed to help patients spot similarities between their disease and that of another, helping to create a sense of community and to ease feelings of isolation.

The researchers also noted that thinking about these disorders as a group, rather than as individual entities, could help to raise awareness. Different from cancer or heart disease, they said, autoimmune diseases are not well understood by the public at large.

Although their study focused on autoimmune diseases in particular, they thought its findings apply to other areas of medicine.

“Within medicine, clinicians and researchers use the language of lumping and splitting to distinguish between two valuable diagnostic classification practices,” Joyce said. “The process of lumping creates broad categories and emphasizes connections. In contrast, splitting emphasizes the differences between illnesses — creating categories that tend to be narrow and more specialized, prioritizing difference rather than similarity.”

Joyce and Jeske propose that physicians consider using more broad and general terms when discussing a particular disorder with their patients. This may help to facilitate communication, even if diagnoses change over time or specific symptoms do not match certain tests.

“In an era of specialization, broad diagnostic categories can help both patients and clinicians navigate the experience of illness,” the two concluded.