September 24, 2010

This is not about me clarifying anything. It’s about me getting confused. Maybe you can supply the insights.  I’ll supply the confusion.

Tonight I was watching a baseball game. The New York Yankees played The Tampa Bay Rays in a crucial late season game. The game was a disaster for the Yanks. But the real action was in the first inning, when what I have come to call a CHMP alarm went off.

Funny about these CHMP alerts.  They seem to go off more frequently in media settings that are not specifically health related.   Explicit and implicit messages about disease and illness are pervasive. Sometimes they come in the form of an intentional message and sometimes they are embodied in a person you confront on the street whose appearance catches your attention. All sorts of institutions and individuals completely outside the realm of health care are often in the position of providing health-related information. You just never know when the alarm will sound and you will be confronted with a CHMP-worthy insight.

True story: I recently took my 12 year-old daughter miniature golfing in the neighborhood. Nice rest from writing about every calamity from flooding to genocide.  But right as I hit my first putt, I noticed that the golfer one hole ahead was a one-time contender for the heavyweight boxing championship. I had heard rumors that he had dealt with fairly severe trauma-induced Parkinson’s disease. But seeing him was jarring. He moved with agonizingly slowness and could barely keep his balance. He was a shadow.

A miniature golf outing had instantly become cultural terrain on which a whole host of assumptions about head trauma and Parkinson’s were on public exhibit. And whatever his actual diagnosis, his very appearance was right there in the open, projecting a host of perceptions about the possible effects of head trauma.

So what about tonight’s CHMP alarm?

A player starting for the Rays – actually playing for the first time this season — was described as having been intermittently challenged with an “auto-immune disorder that causes severe fatigue.” Further, in the maudlin and hokey style of sports disease stories, the player was described as being an absolutely extraordinary young man who had valiantly and courageously fought this illness. You probably have noticed (very much in the manner described in Susan Sontag’s seminal essays), that sports figures in particular fight their illnesses, battle them, and never surrender.

But what caught my attention weren’t the heroic, military metaphors. I have no reason to doubt that the player is as courageous and eminently decent as described.  What I did notice was the unclear and ambiguous language with which his ailment was described. Of course, I imagined Chronic Fatigue Syndrome as a possibility, but the neither the words “chronic” nor “fatigue” were mentioned. Fair enough. I am not an expert and quickly assumed that there were probably a number of auto-immune illnesses that cause fatigue.

But now I couldn’t shake my curiosity: What if it was CFIDS they were describing? What if the omission of “chronic” and “fatigue”  was a function of persistent stigma and an implicit acknowledgement that “fatigue” is part of a vocabulary that is simply has no place in sports? What, in short, if it was the old “CFIDS is all in your mind” business?

So I started to look at some of the past news coverage about this player. Would it surprise you to know that his history is complicated?

Here’s what I found: Earlier in his career news accounts did mention CFIDS.  In fact, numerous CFIDS advocacy groups claimed him as their own. Then at some point, official releases stopped mentioning CFIDS and reported that the player actually had been diagnosed with channelopathy, a mitochondrial disorder.

OK, I thought: One diagnosis was replaced with another. Fair enough. Now it was well beyond my expertise. Back to the game.

Not so fast. Another CHMP alarm sounded!

The announcer of the game suddenly and somberly reported that the Tampa Bay staff had heard the announcer say that the player had some form of immune deficiency and wanted to issue a clarification: The diagnosis, mitochondrial channelopathy, is not an immune illness. It is not connected to any immune deficiency. They couldn’t have been more emphatic. While I thought that I once heard about a connection between channelopathies and the immune system, I am definitely not the one to say anything even remotely informative about that. I was, and remain, even more confused.

And to some extent this story ended there. I don’t know the biology. I don’t know the diseases. I don’t know the various diagnoses. But I do know that the way this information was handled was scandalously unclear and inept.

Years  of studying moral panic and stigma left me with only one more question: Why such an emphatic denial of any immune deficiency, as if someone  had  inadvertently mentioned a mystical curse, a word that had to immediately be retracted? Was there any concern that “immune deficiency” might raise the specter of Acquired Immune Deficiency? I have no idea.

Here’s what I do know: Only clarity clarifies.  Dance around a health issue, discuss it incompletely or ineptly, use euphemisms, and nothing is clear.  And when any diagnosis is denied with such indignation and even embarrassment, at least be curious about whether some imagined and feared stigma might be fueling the vehemence of the denials.

Fair questions, I think.

Steven M. Gorelick, Ph.D., Senior Fellow Center for Health, Media and Policy