The Words We Use: Language and the Patient Experience

So ever since my post for Invisible Illness Week last week, I’ve been thinking a lot about words. Not just any words, but the words involved in the naming, labeling, understanding, and defining of the patient experience:

Illness. Disease. Condition.

When I was first diagnosed with PCD a few years ago, in some ways my world was now divided into a “before” and “after”—for someone who has been sick since birth, this was certainly a novelty. The disease name took all my symptoms, surgeries, and various other complications and wrapped them up into a neat package. As I wrote in Life Disrupted, for the first time, my disease label actually reflected my experiences.

This didn’t mean my physical symptoms were any different after I had a label for them, but they made more sense. I know for patients who have struggled with diagnosis for years, finally having a name for their symptoms can be incredibly validating. It also confers membership in a community of patients with the same symptoms and struggles, which, given the isolating nature of some chronic illnesses, is important.

My new label also meant a huge difference in my quality of life and treatments. After all, if you know what it wrong, you can then learn what you can do to help treat it and perhaps even prevent progression.

It’s not a conscious decision, but I’ve never used the term “chronic disease” when speaking about health situations. I’ve always said I have chronic illnesses. Again, this was never a deliberate choice of words, but in David B Morris’s >Illness and Culture in the Postmodern Age, the author makes a distinction I’ve found really interesting, and related to this: disease is the stuff of doctors, researchers, and objective data and test results, while illness reflects the subjective experience of the patient who lives with symptoms.

This distinction also makes a lot of sense to me. While I think of PCD as a disease, something with a specified symptoms and diagnostic criteria, I think of my experience with PDC (and bronchiectasis, etc) as something entirely different. The disease is a definition or explanation, something removed from my identity as many things, one of which happens to include the word “patient.”

On the one hand, I think this use of the term “illness” can be productive, because it introduces the person into the scientific classification of symptoms, and it inevitably factors in the many aspects our lives impacted by our health—family roles, employment roles, etc. But I know there are patients who consciously choose to say they have a “chronic condition” over the term “chronic illness,” and I find that equally interesting. Is it because “illness” conveys something weak or something permanent, while the more neutral term “condition” connotes something temporary and just that, neutral?

And of course, if we’re going to parse out the semantic of illness and disease further, there’s the word “chronic” itself. As researchers and patients alike have pointed out, there certainly aren’t a lot of positive implications associated with the word “chronic.” Think about it—people don’t say they’re chronically happy, or chronically hopeful, or chronically joyful. They just areBut you do hear things like “chronically depressed” or “chronically unemployed,” etc.

But taken at its fundamental definition, the word “chronic” absolutely fits in with living with things that are treatable, not curable. They will always be there, but some periods they will flare or be more pronounced. In my case, there will never be a day I don’t have PCD (or any of my other problems) but that doesn’t mean they’re pronounced or problematic all of the time. It’s the intermittent nature that makes the term applicable. (Granted, progressive diseases mean that ratio of pronounced versus negligible changes, but still.)

Anyway, what I’m interested the most in all of this are your thoughts. Do you use disease, illness, and condition interchangeably, or do you have a preference? If so, why?