Tuesday, September 16, 2008

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?


Anonymous said...

Laurie, What a pertinent subject for all of us with conditions, illness, illnesses,and diseases. The difference between these terms has always confused me! Glad you have brought this subject up.

The "name","label" issue has been interlaced throughout my journey with chronic "illnesses". What a difference an "s" can make! I'm going to use it from now on.

One of my illnesses is Chronic Fatigue Syndrome--what a lousy name! When finally the name is changed to reflect the truth of this disease it will make an enormous difference in how we are preceived by the medical community and the public.

I just looked up the word disease in Webster's "an abnormal bodily condition that effects normal functioning and can usually be recognized by signs and symptoms"-wow, that covers just about everything. Yet, using the word disease, can feel "dramatic".

What a great topic Laurie. Looking forward to reading the comments and learning more.

Laurie said...

Thanks for the feedback!

Kerry, glad you mentioned the word "syndrome" in your reply; I almost added that to the mix. (A set of symptoms that may point to the presence of something else...?)I do feel like there's some sort of perceptual or connotative difference between "syndrome" and, say, a specific disease name, which I find interesting, too.

Maureen, you raise good points. Makes me think of the conscious choice to say, for example, "patient with chronic pain " rather than "chronic pain patient."

Hope to hear from others!

Unknown said...

I have what I refer to as "chronic migraines", but then there's a few other things health-related that may or may not be related to the migraines that I deal with fairly often as well, so that when I talk to people and am not going into detail, I will generally say that I have a "chronic illness".
I would never say that I have a "chronic disease" because I don't view migraine or any of my other problems as a disease. Syndrome, disorder, condition even,- yes, I would use those, but not disease.
"Chronic disease" seems, to me, to connotate something more than just a chronic illness, or at least seems to be on the more severe end on a sort of chronic illness spectrum.
And so, in that way, I suppose I also view "chronic disease" to be more concerned with the medical aspect, and "chronic illness" to be more concerned with the human, or perhaps even psychological aspect. We may all be in different places on the spectrum of chronic illness (some with what I would call "chronic diseases" and others with "chronic conditions" or whatever which are less severe), but our experiences may still be rather similar.

Aviva said...

As someone with a doctor (rheumy) who insists there's no benefit to a "label" (i.e. a definite diagnosis) if the treatment would be the same as we're already doing, I loved this post.

And I found your analysis of the semantics of the various words we use to describe what ails us just fascinating and mind provoking. I'm going to have to put some more thought into which words I choose to use and why I choose them.

I love it when you make me think. :)

Anna's Spot said...

As a nurse I define my MCS as a chronic illness. My husband (an MD) defines it also as a chronic illness. How interesting that neither of us in a medical field refer to it as a condition or a disease. Thank-you for making me think about it.

Anonymous said...

That's a very interesting post. I generally tend to use a word "condition". But then I am in a funny class - I don't have a label that I could use. The closest one can come is "chronic nonspecific mechanical back pain", and even though it's true, this gives people precisely the wrong idea. This is a "catch-all" category for "no specific pain cause can be determined from diagnostic tests", and my symptoms don't fit well with what an "average" person with back pain experiences. Not to mention that my pain is in my hips, even if doctors say it's coming from my back.

So I feel like I can't quite use the word "illness", because I don't have a name to give it. So I settle for a vague "I have a chronic joint condition", which seems to work better in telling other people what's wrong with me, even if it's not factually accurate.

Laurie said...

Wow, thanks for all the input, everyone. Fascinating to see the different perspectives and different implications of labels and diagnoses (or lack thereof). Interesting timing that two days after this post, Dr. Chen's column in the NYT Well blog was about treating the diagnosis, not the patient, which attributes a lot of power to the concept of diagnosis (for better or worse).

I hope this is a discussion that keeps going!

Anonymous said...

I loved this post. It really spoke to many of the issues that I have struggled with for the roughly 10 (out of my 20 years) that I have dealt with 'inexplicable' pain.

I have had a lot of reactions from physicians, ranging the gamut from disinterest, to implicating me, to denying the importance of any particular diagnosis.

My diagnoses have been IMMENSELY helpful in dealing with the exact experiences you describe--alienation, loneliness, and, for me, developing the strong belief that I was just crazy.

Now I am a college student, living away from my parents, dealing with physicians, medications, and my life relatively independently and I rely on my diagnoses for a lot of tangible support--everything from getting disability services at school, to helping my friends understand that what I struggle with is "real," to feeling a sense of camaraderie with communities like this. Prior to getting validation, there is no way I would have considered myself a part of such a group. Being in pain and feeling all alone is a hugely isolated position to be in.

Thank you for bringing this issue up!

Anonymous said...

Never do I refer to my conditions as diseases, but I believe my experiences with type 2, hypothyroidism, and depression/anxiety do combine to create chronic illness. I find "illness" and "conditions" as somewhat interchangable, particularly in my writing.

MJ said...

I remember about 18 months ago when I first started looking for information and support online, that I came across information about Migraine as a disease. It took me a long time to be able to call it a disease, but now that I do, I feel it's important. Like many other chronic illnesses, Migraine is sorely misunderstood. Understanding and accepting that it is a neurological disease and not just a bad headache helps me to be willing to invest time and money into my treatments, as well as be proactive about my health care.

That said, I do use the term "chronic illness" when I want to be vague about my health issues. (Or, I'll even just say "health issues".) But it's rare I'll just call Migraine an "illness". To me, that lumps it into the same broad category as a cold or the flu.

To me, calling Migraine what it is (a disease) helps me to validate the debilitating effect it has on my life. Not that I need the label "disease" to feel validated, but that this word connotes the impact and severity of Migraine in my life. "Illness" or, even worse, "syndrome", do not carry enough weight.

Now, none of this is to say that I define myself by my disease. I don't. I have Migraine Disease, but that's only a part of who I am.

Thanks for a great post, Laurie.

Be well,

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