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Posted on 19. June 2014

The Words We Use: Language and the Patient Experience

By Laurie Edwards

Illness. Disease. Condition.

When I was first diagnosed with Primary Ciliary Dyskinesia (PCD) a few years ago, in some ways my world became divided into “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 my book 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 misdiagnosis 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: 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 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 - just like many other things, one of which happens to be the word “patient.” 

On the one hand, I think the 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 of 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 semantics of illness and disease, 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 are. But you do hear things like “chronically depressed” or “chronically unemployed,” etc. 

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 during 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 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 most interested in are your thoughts on all of this. Do you use disease, illness and condition interchangeably, or do you have a preference? If so, why?


Comments (2) -

6:13 AM on Tuesday, June 24, 2014

A very interesting thought you have put forward.  How a person defines themself is very personnel.  Whether you have an illness or disease or complications is also relative.  There have been many times when I have listened to people talking about how sick they are and yet relative to other people they have little to worry about.  However to that person it is very important.  So just better to listen and take the person at their word whatever they choose to define their illness/condition or whatever they want to call it.  It tells you something about them, or maybe not because they are overwhelmed with whatever they believe they have.

3:15 AM on Saturday, June 28, 2014

That is an interesting way to think. I too have other chronic health issues.  Peeling one symptom away from the chronic condition of another illness to define a simpler acute problem that has been reoccurring is difficult enough.  Heck with it.

I find it difficult to identify with chronic anything.  Chronic is what comes before pain in the ass.  

Strange as it was for me to here the words used by a doctor to describe my immune disorder.  I just feel the medical jargon is too impersonal for me to own it. I actually had to rehash the word 'chronic' altogether when I got home... I had never applied the word to myself before.  Sure I've been ill/sick lots of times. The term 'condition' seems like how the weather outside is... not my physical wellbeing.

I actually have a difficult time explaining to others just what it is that is wrong if I must explain.  People are not verse in the IgG, IgE, IgM, IgA category of the immunology studies.  Cripes, I am not either... eyes glaze over.

IG Living has been a saving grace in understanding what it is that I've got going on.  My 10 minute moments with my Immunologist just can't feed me the information I need to know about myself. I have a immune deficiency and I get sick if I don't get my IVIG.  And believe me, that is how I feel and how I describe what it is.

I am so grateful to know that I am not alone with my uniqueness.
Thank God!

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