Are You in Pain?

The person with chronic pain lives in a world of suffering that resists expression and challenges empathy. Pain itself is invisible. No artist has painted a picture of the experience of unrelenting pain. No poet has given it words.

Chronic pain is a betrayal by the body of itself. And it is rampant: 20 percent of the global population is estimated to experience chronic pain. This is a larger number of patients than have cancer, heart disease, and diabetes combined. Chronic pain is also the leading cause of the opioid crisis that has wreaked so much havoc, disability, and death.

Science is finally recognizing that making inroads into the treatment of this complex, multifaceted phenomenon must begin by listening to the patient’s story of their pain. Finally!

An innovative, collaborative research project called PainStory is aimed at understanding people’s experiences with chronic pain and integrating them with traditional research measures to try to improve pain treatment. The project is a combined effort of Pavel Goldstein, head of the University of Haifa’s iPain Lab, neuroscience Professor Tor Wager at Dartmouth College, Assistant Professor Yonit Ashar at the University of Colorado, Assistant Professor Alla Landa at Columbia University, and Assistant Professor Jonas Tesarz of the General Internal Medicine and Psychosomatics Department at University Hospital Heidelberg.

A dedicated digital platform provides a safe and secure space for individuals to share their pain stories. Every narrative is unique, and the approach of making the patient’s experience the center of a research program is similarly unique. The international collaboration adds another dimension, both to understanding and developing culturally sensitive treatment. Although the individual stories will remain confidential, the overall impact of PainStory can help change the healthcare culture to one that increasingly validates the patient’s unique experience of chronic pain and reduces the demoralizing stigma that all too often accompanies the syndrome.

Pain is isolating.

Everyone has known acute pain—a headache or toothache, injury or illness. When we have acute pain, we call out our distress, we complain—and sympathy and remedies are generally forthcoming.

Reality is quite different for the person in chronic pain, for whom no relief is available.

That sufferer tends to withdraw, to become quiet, to feel that people are tired of hearing about their pain. Doctors and other healthcare professionals tend to distance themselves from chronic pain patients whom they cannot help. Often the failure of medication, surgery, and other treatments in the physicians’ toolbox leads helpers to not only avoid the patient but even to denigrate them as chronic complainers, neurotics, or as people whose pain is “all in their heads.” Rejection and isolation exacerbate the pain, adding layers of suffering in emotional distress.

A platform like PainStory could be what pain patients have been searching for—an important first step toward relief.