Wednesday, October 08, 2008

Language and the Patient Experience: The Follow Up

I was curious to see what readers had to say when I first explored the difference between chronic illness and chronic disease and other questions of semantics. As I’d hoped, your responses gave me a lot to think about.

I started off with the basic distinction that the term “disease” belongs to doctors and researchers while illness refers to the actual living experience of patients—that which can be tested, biopsied, or otherwise pathologized versus that which we feel. Several people added their own interpretations of the semantic difference. There are distinctions between disease and condition, with some feeling that “disease” is on the more serious end of the spectrum, while a “condition” may be life-altering but is not considered as serious. I find this self-identified spectrum of severity compelling.

I’d never thought about this until now, but while I consistently use the term “chronic illness” to describe the universal challenges of living with medical problems that are treatable but not curable, when someone asks me to describe PCD, I start off with something along the lines of, “It’s a rare genetic respiratory disease.” Perhaps the difference is that in explaining living with chronic illness I am focusing on how it impacts the personal and public roles in my life, but when asked to explicitly describe some of these illnesses, I revert back to the most fundamental understanding of it, a genetic, biological meaning of disease.

What I find interesting is the relationship between diagnosis and claiming the particular language of the patient experience. As I discussed earlier, diagnosis is incredibly valuable for many reasons. It establishes membership in a particular community. It establishes certain treatment plans and regimens. It can limit the isolating nature of living with illness. These are all good things.

As a counterpoint, this New York Times article on fibromyalgia that kicked up a lot of tension last spring poses a downside to this process of naming and claiming: some feel that giving patients a label causes them to perseverate over their symptoms and catalog aches and pains that “normal” people tolerate. This view is an unfortunate downside to the labeling process that has made such a difference for many.

It’s a charge that wouldn’t be levied to such a degree against patients whose medical problems are easily identified through blood tests or biopsies, and perhaps it speaks back to the fundamental differences between the science of medicine and the individual illness experience of the patient. Just because the biological source is not easily explained, does that mean the symptoms are not there?

Obviously not. As a personal example, I talked in Life Disrupted about how the labels of PCD and bronchiectasis did not change the experience and the physical nature of my symptoms. That is, my wheezing, coughing, and thick, suffocating mucus were not any more or less “real” to me when I switched from misdiagnosed patient to PCD and bronch patient—they were just more understood.

This leads me to wonder how much the social constructs of illness (and, by extension, wellness) influence this process of diagnosis and identification. As one person commented, her doctor cares less about the exact diagnosis of her pain if it isn’t going to change the treatment plan. This makes sense to me—if it isn’t going to change care and treatment, is getting that one label more important than maintaining an improved quality of life? I can’t help but think of Dr. Pauline Chen’s NYT column on the tyranny of diagnosis.

But to the rest of the world, I think names and labels matter a lot. What I’ve heard from a lot of patients is that people legitimize or at least try to sympathize more with chronically ill people when they are offered a concrete name for the illness. Is it more socially acceptable, then, to have arthritis, which shows up in certain blood tests and markers and is thus more understood, than to have fibromyalgia, which can’t be reduced down to a simple diagnostic blood test?

Of course this is just one example, but I guess what I’m wondering is how much societal expectations and assumptions influence the importance of the language involved in the patient experience? Let me know what you think!


Jeanne said...


Wow! What an awesome post. I was one of the outraged patients who wrote to the New York Times about the article that proposed the theory that, basically, there is no such thing as fibromyalgia!

My fibromyalgia is no less real than the cancer I had removed a few years back. Just because doctors don't have a blood test or x-ray or a biopsy that can "see it" doesn't make it less real. The NYT article was especially troubling to me.

Fibromyalgia patients suffer greatly and this article was a HUGE disservice to fibro patients!

Chronically ill patients deal with pain, exhaustion, frustration, and reduced quality of life. I think there are times, though, when the most hurtful thing of all is not being believed!!

When people question the validity of a diagnosis, imply that someone who is ill is really just "lazy", or stigmatize people for being disabled... it can be almost unbearable for a patient.

Thank you for another great post. Words do matter!!


catherine (fairchild) calhoun said...

Something I've noticed with my son is that there is a big difference in before and after docs -- the ones who have known him always, even before we learned of his condition/"labeled" his troubles (McCune-Albright) treat him still like he is just him and no big deal while new docs who only know him as a kid with MAS approach him as much more complex -- it balances out, I guess -- sometimes I think that the old timers should be more concerned and the new ones should relax. I do see that people aren't satisfied at times until you name the troubles, even other little kids want a hook to hang the wheels on -- my son will say, "What's the thing I have called again Mom?" And then tell the nosy kid asking about his wheels, oh so casually, "I have MAS."

Anonymous said...

Hi Laurie, I am enjoying your exploration of semantics in our chronic illness experience. Semantics is such a powerful part of it.

One of my illnesses is Gastroparesis. I had a test done, it came out positive, and that's that. As I live with the symptoms I know why I have them--it helps. It is easy to explain, and as a blogger, easy for me to write about.

I also have CFS. What a different story. The name is terrible and inaccurate, explaining it would take hours, and writing about it, I find much more difficult than the cut and dry diagnosis of Gastroparesis.

People are comfortable with what they understand. Naming something helps us put a border around it. Having a border around information helps us sort it out and understand it. The complexity and lack of understanding of CFS prevents it from fitting in any container.

To doctors and others trying to understand, it must seem like walking into a terribly cluttered house. Overwhelmed most want to walk right back out the door.

What joy there will be for us with CFS when it's name is semantically correct! I have no doubt it will change how we are treated and perceived by others. But, as you said Laurie, it will NOT change the symptoms or their impact on our lives.

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