Melanie Thernstrom, The Pain Chronicles: Cures, Myths, Mysteries, Prayers, Diaries, Brain Scans, Healing, and the Science of Suffering, Farrar, Straus and Giroux, 2010
By Dorothy Wall
Melanie Thernstrom’s important new book on chronic pain comes with a warning: The tough-it-out approach to persistent pain is likely to make things worse. If not treated, chronic pain can progress. “There is,” writes journalist Thernstrom, “increasing evidence that over time, untreated pain eventually rewrites the central nervous system, causing pathological changes to the brain and spinal cord, and that these in turn cause greater pain.”
This insight is a game changer, initiating a major paradigm shift. Pain specialists now believe that chronic pain is not merely a symptom of some other underlying condition–multiple sclerosis, arthritis, back injury–but can become a disease in itself. Yet despite current research, the idea of pain as disease rather than symptom has not gained widespread acceptance. Some studies suggest persistent pain affects up to 70 million Americans or as many as 1 in 5 people, and costs the economy as much as $100 billion a year in disability and lost productivity. You’d think these numbers would be a wake-up call. In fact, we have a long way to go with regard to public and physician understanding of this insidious disease, or adequate investment in pain research.
Sound familiar? For the millions with neuroendocrineimmune (NEI) illnesses such as ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome), fibromyalgia, multiple chemical sensitivity or Gulf War syndrome, the pain story is deja vu all over again. A poorly understood condition disproportionately affecting women, that is often dismissed or under-treated despite the fact that early interventions are associated with better outcomes. And because pain is often an ingredient of NEI illnesses, for those in this community, Thernstrom’s book has double relevance.
In 1998 at age 29, following an energetic swim across a Nantucket pond, Thernstrom, a New York Times writer, began experiencing pain in her neck and shoulder. It would be the beginning of a life colored by pain. Thernstrom intertwines a wide-ranging exploration of the history and science of pain and its depiction in literature, philosophy, religion and art, with her frustrating search for treatment and relief, throwing in a story of love lost and found for good measure (the bad guy is irritated with her limits; the good guy buys her three hundred boxes of ThermaCare heat pads because they’re on sale). Along the way she investigates opioids, placebos, positive thinking, stress, and everything in between. She visits pain clinics to interview leading experts and the patients they treat, and tells wrenching stories of the people for whom pain is not an abstract idea but daily reality. One patient describes pain as the punishing “shadow” that follows her every move. A woman named Dani tells of chronic pain’s destructive effects: “You lose friends; you lose co-workers; you lose everything....There was a different Dani before the injury.”
While there are multiple, often interacting, causes of chronic pain–muscular, nociceptive (pain caused by tissue damage or inflammation) and psychogenic (physical pain exacerbated by emotional factors)–the focus today is on nerve damage. “Much chronic pain is now understood to be neuropathic–a pathology of the nervous system originating either in damage to the central nervous system of the brain and spinal cord or in damage to peripheral sensory nerves.”
But the mysteries remain. Physical evidence of damage doesn’t necessarily match symptoms, making pain notoriously subjective. You can have a normal MRI but still have pain, and vice versa. Complicating matters further, “pain presents the same symptom regardless of how it is generated or what type of pain it is, yet different conditions require different treatment.” Then there’s the slippery matter of definition. Is pain a perception? Biological event? Cultural phenomenon? All of these? Thernstrom deftly illuminates these complex issues.
Brain imaging has opened a world of insight into brain function, yet understanding the nature of pain–or sadness, beauty, joy–is still beyond our instruments. Says one pain researcher Thernstrom interviewed, “We naively believed that pain is simple–it hurts or it doesn’t hurt–so there should be a single brain state we could see every time someone is in pain. But what we’ve stumbled into is the discovery that there’s a relative universe of hurt–that hurting is an immense, rich, and varied human experience, associated with an unknown number of possible brain states.”
This is not a tale of victorious science, vanquished disease. Sadly, the heroic narrative of science overcoming disease may not be available to the millions in chronic pain, at least not yet. When asked how her pain is, Thernstrom says, “Better than it used to be. Bearable, almost never unbearable. But still there–always.” She struggles to accept her pain, not wanting it to define her. “On the one hand, I want to be satisfied with the progress I’ve made....On the other hand, to fully accept it feels as if I am settling for a pained life. I want to keep a candle in the window of my mind for my pathography to have something besides a philosophical ending.”
The Pain Chronicles is an ambitious and needed book, the most thorough and up-to-date treatment of this elusive, too-long-ignored, devastating condition, written with insight and grace. It will comfort and inform those who suffer pain, and encourage compassion in those who don’t. For those with ME/CFS or other NEI illnesses, it will be both a familiar story and enlightening new ground.
Dorothy Wall (www.dorothywall.com) is author of Encounters with the Invisible: Unseen Illness, Controversy, and Chronic Fatigue Syndrome, and coauthor of Finding Your Writers Voice: A Guide to Creative Fiction. She works as a writing coach in Berkeley, California.
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