Thursday, August 23, 2012

Finding and Naming (Symptom) Constellations


By Guest Contributor Racheal Borgman, MA  

DSM IV-TR via Wikipedia.org
The rhetorical component of illness is an important extension to the issues raised in last month’s post on the DSM. As Anjana Kallarackal pointed out, there are concerns aplenty when it comes to the DSM and how the committee goes about its categorizing work. But I was especially interested by the very first response to the post, by David Nicholson:

"I wonder if it would be useful to try to put a number to the "negative consequences" of a given addiction… If we could decide how damaging some addiction was, maybe that would tell us how much to medicalize it as well. Insurance companies could decide that they'd cover cognitive behavioral therapy for internet addiction, but nothing beyond that."

It’s an incredibly tempting solution.
But then there’s the pesky rhetorical component of illness that must be contended with. For instance, how do we:
  • know that an illness is an illness?
  • know that a particular group of symptoms corresponds to a particular, named illness? 
  • bridge the gap between the physical experience of an individual and a category of illness that a DSM committee has set down in its tome, and 
  • ensure that the two align? In other words, how do we get to the name of a thing that can then be measured and analyzed? 
By W.K.-L. Dickson,
'Fred Ott's Sneeze'
via Wikimedia Commons
Let's take an example. You have a stuffy nose and you feel a little achy all over. Without thinking much about it, you reach up and feel under your chin. Ah, yes. Swollen lymph nodes. A cold. You go about saying things like, “I’ve got a cold coming on—sore throat, stuffy nose, all that,” and people respond with recognition: “Oh, that’s awful! I was out last week with the same thing.”
What enables this bit of self-diagnosis? How do people understand what your ailment is and feels like from your quick, glossy explanation?

Here’s a twist to the example. You have a stuffy nose and you feel achy all over. Swollen lymph nodes. A rash on your leg. It must be a common cold. You say, “I’ve got a cold coming on—sore throat, rash on the leg, the whole nine yards.” The response is going to be different: “A rash on your leg? What?” One of those symptoms is not like the other.

And that’s what I mean by symptom constellation: a group of symptoms that are understood to go together, to be participants in the same illness, and which, when traveling together, allow us to call an illness by its name. It goes the other way, too: if I decide I have a common cold, I don’t include the leg rash in the description of my illness. Having named the illness, I have also identified its constituent symptoms.

This phenomenon led Arthur Kleinman, a psychiatrist/medical anthropologist/interdisciplinary boundary-crosser, to claim that “illness meanings are shared and negotiated. They are an integral dimension of lives lived together.” [1] Our attention to physical symptoms is driven by culturally-contextualized narrative interpretations of what an illness is and what effects it has.

Dr. Arthur Kleinman, Esther and Sidney
Rabb Professor, Department of Anthropology,
Harvard University
As a practical example of illness interpretation across cultures, Kleinman uses an endangered illness, neurasthenia. In America, neurasthenia has been eradicated. In China, it was flourishing before the DSM killed it in 1995. [2]

Kleinman believes that America eradicated neurasthenia by making a simple tweak to its symptom constellation. Neurasthenia is almost indistinguishable from clinical depression except for one small symptom: mechanical weakness of the physical nerves. In America, we understand clinical depression and its symptom constellation, even if we sometimes need reminders from pharmaceutical ads on the television. Mechanical weakness of the nerves is not a part of our known constellation, and is thus a non-sequitor symptom. If you feel weak and dizzy, you need to ask your physician about some other illness. And quick as a wink, with just that small adjustment to our cultural understanding of depression, neurasthenia was wiped out.

Meanwhile, in China, Kleinman suggests, depression carried a political overtone [3]: being depressed was a statement of discontent with one’s surroundings, both on a personal and a political level. Therefore, an adjustment to neurasthenia à l'américaine would render Chinese patients into political protestors. Neurasthenia became an acceptable alternative, not only as a diagnosis, but as an illness to report to oneself and others. It’s not a matter of lying about physical experience, either—the patients Kleinman interviews describe the condition of their weak nerves in great detail, and are clearly describing their experiences as best they can, much as we describe our lymph nodes as though they bothered us before our fingers felt them swollen.

As another medical/rhetoric scholar, Arthur Frank, puts it: “Suffering comes to understand itself by hearing its own testimony.” [4] Only in a particular cultural context may a patient experience nerve weakness as a part of this particular symptom constellation we know as “neurasthenia.” Otherwise, nerve weakness becomes like a leg rash during a cold: unrelated.

Neurasthenia’s relativity points to the essential rhetorical component of illness: patients’ “stories are the respective products of the worlds each moves through, though these local worlds are also formed anew with each act of interpretation of every story the community recognizes as theirs.” [4] Without communal recognition, neurasthenia ceases to exist. With communal recognition, it flourishes. The same thing goes for mental illness.

Interestingly, the communities in which interpretation and communal recognition happen are frequently different than the communities in which categorizing work occurs.  Physicians, psychiatrists, DSM committees, lawyers, and judges may never encounter the cultural environment that has enabled a particular type of illness, and thus, a particular kind of suffering. (Kleinman has a great story about this, involving pickle juice, here. [5])

Photo credit: Nora Volkow
PET brain scans show chemical differences in the
brain between addicts and non-addicts, via Wikimedia Commons
Which brings us back to Mr. Nicholson’s idea about quantification of an addiction’s detriment. If the identity and even symptoms of an illness change within different communities of interpretation, then so do the consequences of the illness. Mental illnesses provide the clearest examples of this (hysteria in women a century ago, alcoholism in more recent years), but it happens with physical disorders too. So if a minority community, through the acts of saying and interpreting a physical experience, brings an illness into being, how does this influence another community’s act of categorization? When pursuing a categorization project such as the DSM, how do we avoid the tyranny of the majority? How do we avoid institutionalizing prejudices against any community’s narrative interpretations of physical experience? The rhetorical component of illness also problematizes tools that rely on a “normalized” comparative brain or body, including, for instance, brain images used for lie detecting. If the definitions of “wellness” and “illness” are culturally contextualized—often in deeply fundamental, incommensurable ways—then against what “normal” brain or body do we compare a potentially “ill” brain or body? [6]

The very definition of illness or well-being is constantly in flux within disparate cultural communities. The question of categorization—in the DSM or elsewhere—becomes less one of quantification and more one of pragmatic usefulness: how can we do the most good and the least bad to the most individuals, while retaining the usefulness of this categorizing tool? This issue finds special traction in neuroethics in cases of legal deliberations dependent on “official” diagnoses of a person’s mental health. As a special communicative situation, with its own rules, legal proceedings become a second-removed categorization: interpretation is first divorced from whatever particular communities the participants emerge from, and next, the illness is divorced from its own particulars, both the individual’s physiologic involvement and the illness’s creation-through-interpretation that happens on a social level. Like a pinned beetle, the mental fitness of an individual is taken out of its natural environment and displayed against the flattened categories of precedent, both legal and medical, and against guides such as the DSM (read more here and here). When removed from the community of its creation, how can we identify a mental illness? Who is capable of judging the existence of a mental illness?



Want to cite this post?
Borgman, R. (2012). Finding and Naming (Symptom) Constellations. The Neuroethics Blog. Retrieved on , from http://www.theneuroethicsblog.com/2012/08/finding-and-naming-symptom.html#more

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1. Kleinman, Arthur. The Illness Narratives (New York: Basic Books, 1988) 186.
2. Apparently, Kleinman wrote neurasthenia out of existence—with a little help from the DSM:
http://www.ncbi.nlm.nih.gov/pubmed/18040092
3. Kleinman, 109.
4. Frank, Arthur. The Wounded Storyteller (University of Chicago Press, 1995) 171.
5. Kleinman, 130.
6. And for an excellent examination of just such a cultural divide and its influence on medical diagnosis and treatment, check out The Spirit Catches You and You Fall Down by Anne Fadiman.





2 comments:

David Nicholson said...

Great post. I think I'm going to have to read the Illness Narratives now. Can you talk a little more about the symptoms of weak nerves that Kleinman's patients described? That does seem like one thing you actually could quantify, and that would let you classify someone as "neurasthenic" or not. Since you mentioned my comment about quantifying addiction, let me say I hope it didn't make me sound like I think the whole world can be fixed with better measurements...as if I were a retired Physics professor in upstate New York carefully composing a letter to the Economist or something. I totally agree with your point that the people who decide which symptoms correspond to what mental disorder are often not the people suffering from those disorders. To paraphrase Julia's comment on Anjana's post on DSM criteria for addiction: there's a power imbalance when someone else can decide how much of a threat you are to yourself.

Racheal said...

I was absolutely sincere when I said yours was a tempting solution--there's a need for practical tools and categories, and hard(ish) numbers are enticing. And they have to happen somewhere--which is why categorization of illness is such a rich ground for medical ethics.

The thing about mechanical nerve failure is that we do have that in America (or things like that, called fatigue, dizziness, etc.) and people with depression do sometimes experience that symptom, and it is certainly measurable. But it's a different illness. So if you are depressed and you have a physical nerve issue, you do not have neurasthenia. You are depressed and you have a physical nerve issue. Maybe your depression is causing or intensifying your other illness, but it's still an other illness. So no matter whether the symptoms line up or not, neurasthenia is not a diagnosis available to us in our culture.