Listening to Pain

Finding words, compassion, and relief

The Puzzle of Pain

A gift for some, a curse for others

For anyone like myself who thinks a lot about pain, the experience has never been easy to pin down.  This was brought home to me this past weekend when my 10-year-old son responded to The New York Times Magazine cover article entitled “Painless.” She is so lucky, my son said, referring to Ashlyn Blocker, the eighth grade girl who feels no pain.

No, she really is not lucky, I told him. Naturally I understand why my son said what he did. Pain is an unpleasant, at times an awful and unbearable experience. Who wouldn’t want to live without it? As it turns out, however, not Ashlyn and not her parents. Ashlyn has a rare genetic disease (Congenital Insensitivity to Pain) which prevents her from feeling pain when her body is damaged. The result is a never-ending slew of mutilating and potentially life-threatening injuries, like the time she dipped her hand into a pot of boiling water to retrieve the stirring spoon. Because it didn’t hurt, Ashlyn didn’t pull her hand out of the pot quick enough, just as she didn’t notice any problem (or tell her mother) after suffering a massive corneal abrasion in her eye. These delays in detection invariably lead to further damage and the increased likelihood of secondary infection.

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More common in medicine are cases of acquired pain insensitivity in which there is nerve damage due to diseases like diabetes or leprosy.  Like Ashlyn such patients suffer repeated injuries and infections that dramatically reduce their lifespans. The bottom line is that we can’t really live without pain. As bad as it feels when we’re experiencing it, pain is enormously protective to our health and well-being. A warning signal, it alerts us that something is harming the body and that we must do whatever we can to minimize the damage (e.g. withdraw the hand from the boiling water and protect it from further damage). As Norman Cousins said of the physician Paul Brand, who spent his life taking care of leprosy patients in India: “If he could, he would move heaven and earth just to restore the gift of pain to people who didn’t have it.”

It wasn’t easy trying to explain the notion of pain as “a gift” to my young son. It may even be more problematic trying to explain it to one of the 100 or so million people in the United States suffering from chronic pain. For a variety of reasons, patients with fibromyalgia, neuropathies and other conditions have dysfunctional pain circuits. The alarm bell rings even though the damage or danger has past and even in cases where there is no damage or danger. Here there seems to be no good reason for pain to offset the badness of its felt experience. It is much more of a curse than a gift.

Unfortunately medicine is not very effective in treating patients like Ashlyn nor those with chronic pain. More unsettling, perhaps, is that such patients provide medicine with tremendous opportunity. Uncovering their abnormalities helps researchers elucidate normal pain pathways. Moreover, the same gene that is mutated in Ashlyn (the SCN9A gene) causing no pain is mutated in different ways in certain chronic pain syndromes causing too much pain. The hope is that researchers will ultimate figure out how to manipulate the gene (or the protein it codes for) to dampen it for the chronic pain patient and enhance it for Ashlyn. Until then, one will pray for pain while the other will continue to curse it.

David Biro, M.D., Ph.D., practices in New York and teaches at the SUNY Downstate Medical Center. His book, Listening to Pain, draws upon his background in the humanities and medicine. more...

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