David Biro MD, PhD, Silent Bond
The New York Times, 1998
There is nothing like a crisis to galvanize a family, to set its silent wheels in motion.
Two years ago I found out I had PNH, a rare disease that decimates the bone marrow. I was 31, the oldest of four and the only son, about to join my father’s dermatology practice. The doctors told me my only hope was a bone-marrow transplant; they would fill my languishing marrow with healthy stem cells from a suitable donor.
News traveled swiftly. The next day, my three sisters converged on Memorial Sloan-Kettering Hospital. Much as certain cells in the human body rush to repair damage from an injury, my sisters gathered to take the test of marrow. Each had a 25 percent chance of being a match. Each yearned to be the donor. Each was terrified of failing.
Like a winning spin on a slot machine, an ideal match must correspond at six distinct genetic sites. Lisa, my oldest sister went first: she matched at only three. Debbie, the second sister, followed with four. Michele, the youngest went last. And in that final trembling pull of the lever… (continue article)
David Biro MD, PhD, Psychological Pain: Metaphor or Reality?
Pain and Emotion in Modern History, 2014
In the opening chapters of Anna Karenina, Dolly discovers that her husband Stiva
has cheated on her again. She is furious yet also heartbroken. Tolstoy writes that Dolly ‘winces as if from physical pain’. He repeats this several times for emphasis: “Dolly again feels pain and wishes she could inflict even tiny bits of the same physical pain on him’; ‘She cried out, not looking at him, as if the cry had been caused by physical pain. ’While Tolstoy’s characterization here illustrates his profound insight into human nature, it also points to confusion about pain that persists today. The fact that Tolstoy uses the simile form and finds it necessary to qualify the pain as ‘physical’ suggests that he may not be so sure about what his character is experiencing. Is it really the same feeling one has after breaking a leg or suffering a burn though nothing has happened to Dolly’s body? Or merely like that feeling in some respect or another?…(continue article)
David Biro MD, PhD, When language runs dry: Pain, the imagination, and metaphor.
Dimensions of Pain: Humanities and Social Science Perspective, 2012
At the height of his career, the novelist William Styron fell into an agonizing depression that drove him to the brink of suicide. He would later try to make sense of the experience by writing a memoir. In Darkness Visible, Styron winds back the clock in an attempt to pinpoint the decisive moment in his illness. He vividly recalls the details leading up to his breakdown: it is late October 1985, a chilly evening in Paris, the streets are slick, the neon signs of hotels glowing, and he is about to receive a prestigious literary award. Then, suddenly, the lights go out. When the pain strikes, Styron’s lucidity and descriptive powers rapidly disintegrate. The pain, he writes, is close to physical pain. No, it is different. The pain, he tries again the next moment, is like suffocating or drowning. But that is not right either. The pain, he decides in the end, is simply “indescribable.” For perhaps the first time in his life the Pulitzer-prize-winning writer finds himself speechless
(Styron 1962: 3-20)…(continue article)
David Biro MD, PhD, An Anatomy of Illness
Journal of Medical Humanities, November 24, 2011
Because it focuses primarily on the sick body (disease), medicine ignores many of the concerns and needs of sick people. By listening to the stories of patients in the clinic, on the Internet, and in published book form, health care providers could gain a better understanding of the impact of disease on the person (illness), what it means to patients over and above their physical symptoms and what they might require over and above surgery or chemotherapy. Only by familiarizing themselves with the entire emotional landscape of illness, which includes fear, anger, shame, guilt, and above all loneliness, can the healthy— medicine as well as society in general—hope to heal in a comprehensive manner.
Illness has impressive reach. It begins in the body, with symptoms like fever, weakness, pain. Or in abnormalities detected on a doctor’s examination (a heart murmur, a change in mental status) or on a medical test (a high white cell blood count, an abnormal chest x-ray). These signs alert us of trouble within. Something is wrong with my mind, my bone marrow, my lungs. But unlike disease, illness doesn’t end in the body but quickly spreads beyond it, fanning outward to involve first the person as a whole– something is wrong with me—and then one’s relationship to the world—I am now different from everyone else. The reach of illness can be represented by a series of enlarging, concentric circles set in motion by a source—disease—that keeps on repeating itself…. (continue article)
David Biro MD, PhD, Redefining Pain
Palliative and Supportive Care, (2011), 9, 107–110
Medicine defines pain as a signal of physical injury to the body, despite evidence contradicting the tight linkage and despite the exclusion of vast numbers of sufferers who experience psychological pain. By broadening the definition to include both functionalist (or objectivist) and phenomenological (or subjectivist) features of pain, we would not only better accommodate the basic science of pain but would also recognize what is already appreciated by the layperson, that pain from diverse sources – physical and psychological –share an underlying felt structure.
Pain has been traditionally considered a bodily or physical experience. It happens when the body has been injured. And it is precisely the injury, whether external (a visible wound on the surface of the body) or internal (damage to underlying tissues or organs), that is supposedly common to all varieties of pain….. (continue article)
David Biro MD, PhD, Is There Such a Thing as Psychological Pain? and Why It Matters
Culture, Medicine and Psychiatry, September 13, 2010
They say passing a kidney stone is the worst pain you could ever have. They’re wrong. Sure it was bad. I remember whimpering like a baby in the Emergency Room. But it was a joke compared to this pain which never passes. It just keeps on going and eating me up inside. I still feel it now, intense as ever, 10 years later.’’ Dan Vento is talking about the time his daughter suffered a relapse of an uncommon form of cancer called osteosarcoma. Jennifer was nine, the youngest of his three daughters. Dan and his wife Mary thought they had weathered the storm. The initial round of chemotherapy seemed to work. But a year later, Jennifer’s left knee began to swell and hurt again, then her thigh, then her back. The cancer not only had returned but was now all over Jennifer’s body, and it had happened so quickly that even the doctors were caught off guard.
Naturally the Ventos tried everything, even a bone marrow transplant. But the cancer could not be stopped. Metastatic tumors invaded Jennifer’s bones, obstructed her airways and destroyed her vision. Overnight, their little girl had become unrecognizable, from the cancer and from the aggressive treatments—a swollen, lumpy mass with tubes and IV lines hooked up to beeping machines. The worse part was that there was nothing they could do to help… (continue article)
David Biro MD, PhD, The Importance of Describing Pain to Your GP
The London Times, Tuesday, August 31, 2010
Choose your words carefully when describing pain to your doctor – it can make all the difference.
The first question your doctor will ask is where does it hurt? That’s an easy one. It’s the next question that usually creates the difficulties and often leaves patients tongue-tied: now can you describe the pain?
Describe what? Although we can usually figure out where it’s coming from, pain is very much inside of us, even when there is a visible injury on the body’s surface. We can’t see pain, touch it, hear it. So how can we possibly paint a picture of what is inaccessible to our senses, for pain – as Emily Dickinson, the American poet, once said – “has an element of blank”.
What compounds the blankness is the fact doctors never seem to have enough
time, patience, or training to help patients find the right words, or any words for that matter. And yet a good description of pain can be as important as a physical exam or an MRI scan in making the right diagnosis of an illness. One young man we’ll call Peter might have understood that better than anyone. He developed… (continue article)
David Biro MD, PhD, What Health Care Reform Forgot
The Philadephia Inquirer, January 22, 2010
In his characteristically inclusive way, President Obama invited all the interested parties to help him find a solution to the health-care crisis: insurance companies, pharmaceutical companies, hospitals, doctors, lawyers.
But there was one notable absence: the patients, the group supposedly at the center of all these efforts. Wouldn’t it make sense to solicit their input on improving the health-care system?
Then again, I’m not surprised by the slight. Whether it’s in the Oval Office, a hospital, or a clinic, the patient is present only in the most marginal ways -a sick body, a case, a number. Patients are rarely addressed as people with real feelings, and rarely heard as people with something to contribute.
I know this not from my experience as a physician, but from my experience as a patient – as well as from teaching medical students about the human side of medicine… (continue article)
David Biro MD, PhD, Personalizing Medicine: The Need for a Companion to Gray’s
International Journal of Dermatology, 2010, 49, 849–850
So many unexpected events can alter the course of a life. For me it was an illness. A few months after finishing my dermatology residency, I was diagnosed with a life-threatening blood disorder and would need a bone marrow transplant. Overnight I went from being a doctor to being a patient. And though I would metamorphose back again, I would never be the same, surely not the same doctor.
Now 15 years later, much healthier, happily married with two beautiful boys, and
enjoying my chosen profession, I am still consumed by the discoveries – also very much unexpected – made during my journey to the land of the ill.
Becoming sick, I found out, isn’t just a matter of the body breaking down. It involves the breaking down of one’s entire being. Beyond fever, headaches and pain, there is also anger (why me?), fear (what will happen to me?), shame (what has become of me?), and vulnerability (why do I feel so helpless and alone?). These extra-physical symptoms of illness changed the way I saw myself, affecting everything important to me, my career, marriage, friendships… (continue article)
David Biro MD, PhD, A Commentary
The Mirror and Self-Knowledge: Literature, Arts and Medicine Blog, 2009,
Illness like any experience that deviates from the norm (in this case, the norm of health) triggers a search for meaning: something is wrong with me, I must find out what is happening. Since the source of illness lies within us, we instinctively turn to introspection: let’s try to see what’s happening. But immediately we encounter obstacles. There is the opaque surface of the body that literally prevents us from seeing inside. And more significantly an entire nervous system designed specifically to limit (thankfully) our engagement with the body and continually point us in the opposite direction. Even consciousness – that quintessentially inner and private realm – constantly reaches outwards towards the objects in the external world that we think about, desire, and fear.
While not explicitly offering illness as a case-in-point, many contemporary thinkers including Sartre, Foucault and Lacan have consistently undermined the traditional approach to self-knowledge by introspection. Instead, they emphasize the importance of the Other in understanding the self. We rely, for example, on other people like doctors, who, in turn, have studied other bodies (both dead and alive). We rely on things like books and the Internet which provide information about ourselves. And of course we rely on that ancient means of self-reflection, the mirror, which allows us see ourselves from perspectives otherwise unobtainable… (continue article)
David Biro MD, PhD, Book Review of Inside Chronic Pain: An Intimate and Critical Account by Lous Heshusius
Health: An Interdisciplinary Journal for the Social Study of Health, Illness and Medicine, 2010
Despite its morbid subject matter, there are ways to turn illness narratives into compelling reads. One can ratchet up the drama and suspense (e.g. Frigyes Karinthy’s A Journey Round My Skull and Jill Bolte Taylor’s My Stroke of Insight). One can fill the narrative with deep insights (Oliver Sacks’s, A Leg to Stand On and Arthur Frank’s At the Will of the Body). Or one can aim for the lyrical brilliance of poetry (Anatole Broyard, Intoxicated by My Illness and Sarah Manguso, Two Kinds of Decay). In her new book, Inside Chronic Pain: An Intimate and Critical Account, however, Lous Heshusius chooses none of these strategies. Unlike Tennessee William’s Blanche Dubois, she will have neither romance nor magic; she wants to tell it like it is.
A courageous tack, clearly, since the reality is downright uncompelling and ugly. In a moment of inattention, the Dutch-born education professor now living in Canada was blindsided by another car as she pulled away from a stop sign. In that moment she exits a rewarding life, professionally and personally, and enters what she imagines to be ‘Hell’: constant, often paralyzing pain; endless visits to doctors and other health care providers (over 60 in all) who offer few answers and at times make the pain worse; and increasing loneliness as her world retracts inward and she becomes progressively isolated from friends and family. This new life has lasted 11 years so far, she tells us in her memoir, and is still going…. (continue article)