The Subjectivity of Suffering: An Exercise in Compassion
It's time to dispel some common misconceptions about people with chronic pain.
Posted Nov 01, 2017
Last month, a patient walked into my office smiling. How many people enter a neurologist’s office smiling? Often an initial social smile quickly disappears as we get down to the business of discussing a neurological problem that brought someone to my office, and the anxiety or outright fear of what that diagnosis might mean grows. On that particular day, the patient — I’ll call her Ms. S — probably smiled in part because I smiled. And I did smile; I was happy to see her. What is surprising about this particular patient’s smile is that it came from a woman who has suffered from not one, but five neurological illnesses, and many non-neurological illnesses.
Ms. S is in her mid-80s now and first came to me years ago with frequent seizures and confusion. Her seizures proved to be very difficult to control and required multiple medication changes, and her confusion turned out to be a toxic effect of medications. In addition, she also had painful nerve injury in her feet from diabetes and suffered two strokes less than a year apart. After that, she was pushed by a mentally ill woman on the subway, fractured her pelvis, hit her head, and developed a bleed into her brain. She spent some time in a rehabilitation program, recovered yet again, then came to see me for a follow-up.
When I asked her how she was, she cheerfully said, “I’m fine.” This struck me as so remarkable that I complimented her on how fine she was, independent and feeling well despite all those terrible neurological illnesses. We spent a lovely 25 minutes on her problems, and then we said goodbye, until the next visit.
Ms. S was not the first patient who'd amazed me with her resilience. Over the 27 years that I’ve been learning and practicing medicine, I’ve seen quite a few people who, like Ms. S, seem to transcend their diagnoses, undaunted by problems that might destroy someone else’s life.
I’ve also taken care of people with the “opposite” reaction. The memory of one in particular stays with me: a woman in her 20s whom I cared for more than 15 years ago. She’d had daily headaches for years, and no medication had ever worked. All the tests to look for a worrisome medical cause were normal. Her examination was normal too, and she looked perfectly well. But she was unable to work because of headaches and, on that first visit to my office, she wanted me to fill out full-time disability paperwork and an excuse for jury duty.
It is hard not to compare these two individuals: one young woman who has a single non-life-threatening diagnosis that has left her chronically disabled, the other an octogenarian with five serious neurological diagnoses who has no complaints. One major question this juxtaposition raises is why does one person suffer cripplingly from one apparently “small” problem, while someone else doesn’t appear to suffer at all from many “large” ones? Is there a biology to that difference? Is it “real” or imagined?
Research helps answer at least some of these questions. There are clear differences in the subjective experience of pain, differences that have a basis in biology and are visible with brain imaging. Pain-related patterns of brain activation depend not only on the intensity of pain, but also on an individual’s perception of how severe the pain feels. Studies have identified factors influencing the subjective experience of pain: attention or distraction that can both worsen and reduce pain, expectations (such as the placebo effect), race/ethnicity and gender, genetics, and psychological factors, such as coexisting anxiety, depression, and personality. Some of these factors are inalterable, but some may be amenable to change.
Causes of these differences aside, what I struggle with, reflecting on these and other patients, is how not just doctors, but family members and friends, too, react to people differently, depending on how those people experience and express their experience of illness and pain.
It was a pleasure to see Ms. S, because she was doing so well. She wasn’t complaining because she’d triumphed over her illnesses. And from my perspective, that also meant I’d succeeded in helping her. Meanwhile the 20 year old with apparently “nothing wrong” was miserable, and couldn’t do any of the things she was asked to or expected to do, despite being apparently “normal.” And I couldn’t help her no matter what I did. I don’t remember whether I smiled at her, but years later, recalling her story makes me doubt it.
This is a hard thing for anyone to admit, particularly someone who has chosen a career that revolves around caring for others. But this is how people with chronic pain often go through the world, with people expecting them to “get over it” and blaming them for their negativity. They frustrate others — professional caregivers, family, friends — who want to help but can't. Research has something to say here, too: people with chronic pain have such severely diminished health-related quality of life that their disability is on the same level as those in terminal palliative care for cancer diagnoses. Being in pain is actually as bad in some ways as dying of an incurable disease, but chronic pain can be invisible, and doesn’t always produce the same level of empathy in response.
What can we do, faced with frustration when someone we care about can’t seem to function despite having “nothing wrong"? It’s easy to forget that the therapeutic relationship is more than devising a medical or practical solution that will reduce pain and suffering. Sometimes we must simply be present, listen, and not minimize the subjective experience of pain, or criticize the person whose pain it is.
Maybe it helps to know that the personal experience of suffering has a biological basis. But even without that knowledge, I remind myself that on the other side of that suffering is a person who needs compassion, and who has probably been deserted and disparaged many times. It’s a difficult task to approach that suffering with compassion, over and over again, especially while filling out endless pages of disability forms and jury duty excusal letters. But it’s a task worth working at, and even if it takes me 27 more years to get good at it, it will be worth the effort.
Coghill RC PhD. Individual Differences in the Subjective Experience of Pain: New Insights into Mechanisms and Models. Headache 2010 Oct; 50(9): 15311-1535.
Wijers IGM et al. Disease burden morbidity assessment by self-report: Psychometric properties in older adults in Spain. Geriatr. Gerontol 2017; 17: 1102-1108.
Valiant GE and Mukamal K. Successful Aging. Am J Psychiatry 2001; 158: 839-847.
Vartianen P et al. Health-related quality of life and burden of disease in chronic pain measured with the 15D instrument. Pain October 2016 157 (10) 2269-2276.