What if your doctor said you had ‘Terribly sad life syndrome’?

Posted 6/4/14

Jacob Riis' "How the Other Half Lives.”[/caption] by Hugh Gilmore (A poem) "begins as a lump in the throat, a sense of wrong, a homesickness ..." – Robert Frost, 1916 Last Friday, I picked up the …

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What if your doctor said you had ‘Terribly sad life syndrome’?

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Jacob Riis' "How the Other Half Lives.” Jacob Riis' "How the Other Half Lives.”[/caption]

by Hugh Gilmore

(A poem) "begins as a lump in the throat, a sense of wrong, a homesickness ..."

Robert Frost, 1916

Last Friday, I picked up the May 5 New Yorker magazine and started to read an article titled “Prescription for Disaster: The heartland's pain-pills problem,” by Rachel Aviv.

The story describes how a 55-year-old doctor in Wichita, Kan., Stephen Schneider, and his 47-year-old wife, Linda Atterbury, were arrested and charged with causing several deaths through the unlawful distribution of controlled substances.

The couple had established a medical clinic in Witchita that began as a family medicine practice but evolved into a clinic heavily dependent on serving the needs of chronic physical pain patients. Plus – to a degree never quite accurately measured – they also treated many persons who began as recreational users of opioids but became addicted to them.

Some folks treated by Dr. Schneider saw him as a hero who championed the poor and pain-ridden. Others saw a man who did not want to know anything beyond the surface stories of his patients. The Federal government saw his motive as monetary and pressed charges. Schneider was sentenced to 30 years of prison in Arkansas; Atterbury, to 33 years in Texas. They are not allowed to talk to each other on the phone, but they are permitted to correspond.

Recognition that pain management is an important aspect of medical care is a relatively new phenomenon. Most doctors in the medical community of Wichita were glad that Schneider accepted the patients they couldn't or wouldn't serve, especially since many of those patients were Medicaid-supported only. There is little money and not much satisfaction to be had, for most doctors, in having a large proportion of their patients be on Medicaid.

While reading this piece my fascination with language was piqued by an amazingly pat- but-apt phrase I read. A professor of psychiatry at the University of Washington, Mark Sullivan, was quoted as saying that in poor rural areas doctors are using opioids to treat "a complex mixture of physical and emotional stress." Dr. Sullivan said one of his colleagues referred to such patients as suffering from "terribly sad life syndrome."

My mind couldn't rest after reading that phrase. That final word, "syndrome," felt rather distanced and cold. Would you like all the tough luck and bad choices you're ever experienced summed up as a "syndrome"?

And yet, there seemed to be sympathy behind the phrase. Plenty of other words might tumble from the judgmental lips of less empathetic doctors. Along the same lines, but on the other end of the economic scale, the new word "affluenza" has arisen to describe people of privilege whose upbringing has (somewhat) similarly left them confused and pained.

In the worlds of literature, music, and art, some of what we're talking about here used to be called "the human condition." The particular people Dr. Sullivan describes – people who "are at a dead end, life has stymied them, they are hurting" – were the subject matter of a number of great writers. I think easily of Steinbeck's sympathy for the downtrodden, Maxim Gorky's "The Lower Depths" and "Creatures That Once Were Men." The still mysterious B.Traven's "Jungle Novels" and much of Charles Bukowski. In nonfiction, Jacob Riis' classic on the slum tenements of New York, "How the Other Half Lives."

I wondered if the phrase "terribly sad life syndrome" was an already-established one in psychiatric or sociological jargon. It sounded so immense and descriptive, yet disturbing. I Googled the phrase. Some of what I found follows.

The first Google response was that of a West Virginia writer named Sean O'Leary. He already had the quote up in his blog "The State of My State," and applied it to the sad condition of West Virginia, the state that leads the nation in deaths by drug overdose.

The second-listed Google return was a summary of bullet-points from a conference on "Safe and Effective Use of ER/LA Opioids" offered in September 2013 by Dr. Dixie L. Harms. She cited the term “terribly sad life syndrome" from a paper by the afore-mentioned Mark Sullivan, & J. Ballantyne (2012). "What are we treating with long-term opioid therapy?" (Archives of Internal Medicine, 172 (5), 2156.)

I was able to find Sullivan and Ballantyne's article listed fifth on the Google response list. The authors write, "Cicely Saunders long ago advocated treatment of “total pain” in her program at St Christopher’s Hospice. Saunders’ total pain includes physical, psychological, social, emotional, and spiritual elements. Studies to date of how LtOT (Long-term Oxygen Therapy) is used in clinical practice suggest that it is being used to treat something like total pain or what one of our primary care colleagues recently termed terribly sad life syndrome" (Italics mine).

The "primary care colleague" who invented this strangely weird but beautiful quote is not named in the bibliography.

I wanted to know if this phrase has any currency in the medical literature, or if it's unique to the doctor quoted by Dr. Sullivan. I went to the U.S. National Library of Medicine website and typed in "terribly sad life" and "terribly sad life syndrome." Several hundred responses came back, none with that specific phrase. So I imagine the term is new, has not caught on yet, and originated with that unidentified primary care doctor in Seattle, Washington, sometime before 2012. Though not yet a common phrase in our culture, stay tuned.

As for what else I found on Google: There were lots of things tagged as "terribly sad," such as: separation anxiety, Down's syndrome, bipolar disorder, chronic fatigue syndrome, terribly sad movies, terribly sad quotes, poems, crossword clues, and so on.

My final thoughts, at least for this article as we go to press, are these: it seems to be that if you have two or more cases of heartache, it's a syndrome; if you have just one, it's a poem or novel.

If you're lucky, and the physical pain is not terribly overwhelming, then perhaps, for those who believe in such things, a poem may be as good for the soul as an opioid.

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