When analyzing how people who live with autoimmune illnesses communicate about their conditions, professor of sociology Kelly Joyce in the College of Arts and Sciences found it’s helpful for patients experiencing symptom ambiguities and shifting diagnostic labels, as well as for the physicians treating them, to use both broad diagnostic terms, like “autoimmune disease,” as well as narrow ones, such as “lupus” or “MS.”

Drawing on 45 in-depth interviews with people who live with autoimmune illnesses, Joyce’s research showed that both types of diagnostic classifications are integral to diagnostic work and explaining illness experiences for people with these conditions.

“Within medicine, clinicians and researchers use the language of lumping and splitting to distinguish between two valuable diagnostic classification practices. The process of lumping creates broad categories and emphasizes connections.”

—Kelly Joyce

More than 80 illnesses are considered to be autoimmune or autoimmune-related, and more than 50 million people in the United States live with these conditions. Though autoimmune illnesses vary widely, the common thread is an immune response that attacks healthy cells, tissue and/or organs.

Joyce’s study suggests that the label “autoimmune” provides, at minimum, some understanding and a scientific explanation as to what is happening to patients and how to manage symptoms, though exact diagnosis may be a moving target. Even within a narrow diagnostic category like Multiple Sclerosis, for example, there is enough variation in illness experiences that using a broad category term like autoimmune helps patients see what they have in common.

In light of her findings, Joyce suggests clinicians should consider presenting patients with both broad and narrow disease classifications when discussing autoimmune diagnoses initially and over time.