Given the huge amount of attention given to the outbreak of Covid-19 this year, one would perhaps be forgiven for thinking that our perception of disease is fairly uniform. Alas, new research from Drexel University reminds us that our perceptions differ, especially if a disease is hard to name and doesn’t have visible symptoms.
The researchers highlight conditions such as lupus and multiple sclerosis as good examples, as both are chronic but often suffer from delays and changes in diagnosis. What’s more, symptoms can often not be overtly apparent, with both the cause and the cure unknown.
The researchers conducted in-depth interviews with people living with autoimmune illnesses, and found that using a broad category to describe their condition helps to provide a degree of certainty and continuity when conveying what are often highly inconsistent illness experiences to family and friends, as well as the medical profession.
Talking about illness
The interviews revealed that people typically describe their illness using the broad category of ‘autoimmune’, before providing more specific information. They found that this made it easier for them to provide continuity in their discussions, even if there was considerable change in their condition or diagnosis.
“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,” the researchers say.
This nomenclature also allowed a sense of community to form between themselves and others, with this shared experience valuable in dealing with their condition. This support doesn’t have to revolve purely around those close to you, with clear examples of support from various cancer and other disease awareness initiatives that engender support across society.
Broad categorization helps to make such community building efforts easier as it makes communication more achievable. It ensures at least some understanding is conveyed, even if exactness is not possible.
“Within medicine, clinicians and researchers use the language of lumping and splitting to distinguish between two valuable diagnostic classification practices,” the researchers explain. “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.”
As a result of their findings, the researchers urge clinicians to present patients with both broad and narrow disease classifications, as the broad categorization will help to provide continuity and certainty, even as the narrow classification provides more practical advice.
