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?

13 comments:

Kerry 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.

Maureen Hayes said...

I loved the thought you put into the semantics of the words we use to describe our life with these conditions. I found it very interesting to think about the different things one might take away from using one or another term.

I think when I was first diagnosed I tended to use the word disease more often, maybe because I had spent so many years trying to find a "label" for what was wrong and to be believed. Then I started to notice something (this goes back about 10 years ago), the people on the boards for my illness who seemed to define themselves as the illness always referred to it as the DD (darn disease). That set me back on my heels, because while I have multiple chronic illnesses, I am not any of those things, they are a PART of who I am. So I think I subconsciously shifted at that point to chronic illness, which seems to be what I am partial to today.

I enjoyed what Kerry had to say and look forward to seeing what your other readers think about what label they use to describe themselves. Thanks for a thought provoking post!
Maureen
Http://Beingchronicallyillisapill.blogspot.com

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!

Cassanndre 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.
Anna

MD 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.

Jeanne said...

Laurie,

Wow! What a post!

First let me say that it's nice to finally "meet" you. I have seen your blog listed on www.curetogether.com zillions of times but never got a chance to pop over here. Then I saw your face on Maureen's blog just now and you looked familiar (probably from last week's awareness week blogging, I'm guessing)...

So I just had to pop in and say "hi". Little did I know I'd get onto such a roll with my comment but your post got me rolling pretty good...

Years ago, I read that "disease" means some sort of pathological process in the body. An extreme example of this would be cancer. The same book (can't remember the book's name) said that "illness" is a term used for the stuff that isn't by medical definition a "disease" OR "healthy" either.

I remember being annoyed that the book called endo an "illness" rather than a "disease" (although both terms are used by docs for endo)... I guess back then I though "disease" sounded more severe and "validating"...

As you said, chronic does have a negative connotation...

I have many chronic "illnesses"... so many that I never seem to have the energy to type them all!

I usually mention endometriosis first since I've had it for 26 years now. (I'm 39 now). I also have fibromyalgia, interstitial cystitis, neuropathy... etc.

I agree with Maureen that I can seperate "illness" from my identity better than I could separate "disease" from my body. Did I word that right? Probably not because I am very tired!

While endometriosis IS pathological (because it can be biposied to verify what it is & because it can be visualized/recognized by a surgeon)... since I can't see it myself, endo seems just as "invisible" as my other illnesses that are truly invisible to my docs AND to me!

I've heard "syndrome" as referring to nebulous "conditions" like fibro, Reynaud's, and like many poorly understood autoimmune "conditions".

I have several "syndromes" too... (i.e "MCSS" or multiple chemical sensitivity syndrome).

My acupuncturist isn't super-fond of any "labels" unless they help him understand the patient better than symptom descriptions from the patient and feeling the patient's pulse. :)

"Illness" comes in handy when trying to be vague with strangers, I have found. I don't always have the time to explain EVERYTHING to EVERYONE all the time.

So "illness(es)" works for me when I'm thinking on my feet.

I don't fit neatly into any category.

I've had cancer... which I think most would call "disease". (Of course, readers of a book I read - name escapes me - could talk about the definition of "dis-ease" too... Dis-ease is defined by the book as the body not being at ease with itself)!

I certainly have some "syndromes", if you go by my docs' labels.

I have "illnesses" galore!

So I'm not sure what terms to use for what in my case. I probably use "illness" the most because it seems to emcompass everything to me...

I write about numerous "illnesses" on my blog because I have firsthand experience with so many...

Peace,

Jeanne
www.endendoat.blogspot.com

P.S. GREAT POST!! I'm so glad I finally found your blog!! :) I see why your blog is prominently featured on CureTogether's site...

Jeanne said...

Laurie,

I tried clicking your email link but got an Internet Explorer security error that I really don't want to bypass (my PC's privacy settings are pretty high due to being burned in the past with a virus killing my hard drive).

I looked for you on Twitter.com but no luck. Then I looked at CureTogether where I thought I had seen you & I found this blog's address... but no email address. I searched on MyBlogLog.com but no luck. I even saw you as a commenter on Mckay k's site: (http://livingwithachronicillness.blogspot.com/). No... I'm not a stalker. :)

Actually, all I wanted to do initially was add you on my Twitter.com feed because I really liked this post but didn't have time to read any other posts here just yet (though I certainly will in the future!!)...

Twitter reminds me to touch base with people since I see their faces/profiles on my Twitter homepage each day.

In hindsight, it might have been faster to just read on but I was trying to get back to my own blog and my too-full email inbox before it gets too late. :)

Once I started looking for your email address, I was on a mission... because I quickly realized that we've just barely missed crossing paths before on a few occasions.

So I finally figured, at the risk of looking obnoxious, I'd just post here and ASK YOU to email me IF you feel so inclined: endendo@frontiernet.net.

I truly was just going to add you to my www.twitter.com contacts (!) for now... but once I'm "on a mission", I'm hard to stop!!

:)

Jeanne

P.S. Gee, when I saw your comment on Maureen's blog, I didn't know that popping over to your blog would not take "just a moment"... Take that as a compliment! :)

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!

Karin 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!

talesofmy30s 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.

MaxJerz 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,
MJ
http://rhymeswithmigraine.blogspot.com

 
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