in agreeing that pain will truly be mastered only when we have more and better treatments than exist today.

THE IMPACT OF PAIN

Pain sufferers’ survey responses testify to the terrible ways in which pain can transform one’s life—the sense of loss of self, relationships, and career that can accompany chronic pain. One woman describes herself as “a shell of my former self—I lost friends, family, my job, my sanity.” Another speaks of how, “on my wedding day—one of the happiest day[s] of my life—I was in so much pain, and so tired, I could barely stand.” She goes on, “so now I find myself in a situation where I am forced into a life that is ‘just existing.’ Dreams of having a great career and large family are gone. Please help this cause. It may be too late for me to get all of my dreams back. It may be early enough to help the others that will follow.”

Yet paradoxically, this affliction often appears to be invisible. “Yesterday I was lucky, the pain was kind and waited until after I got back home before showing its true colors … black and blue,” one man writes. “No one sees the colors upon my skin. My pain is internal. It is physical. It is mental.” Another writes, “my chronic pain does not show up on an MRI or in blood work. Yet it is with me 24/7 and has changed my life completely so that I am very limited in my ability to function compared to before my illness.” Pain sufferers indicate a longing for objective documentation, but in its absence, experience pain as a deeply isolating state.

Perhaps as a result, one of the most characteristic experiences described by respondents—one quite different from experience with other serious diseases—is simply “not being believed” by health care professionals and others. For example, one woman reports, “after examining me and doing an ultrasound, my doctors said the only problem I had was in my head.” (She was eventually diagnosed with endometriosis.) Others report being repeatedly second-guessed about their motivation: “Since 1991 I have been dealing with mistrust in motives for seeking pain care. Most doctors I encountered did not believe that my pain was severe enough to warrant more than ibuprofen.”

Health care professionals report similar observations. A nurse who teaches at a hospital-based nursing school writes: “I teach students as most faculty do, that ‘pain is what the patient says it is.’ But when I bring them into the clinical arena they see in real practice that nurses and doctors disbelieve the patients’ complaints, and treat them as drug seekers (this is especially [true for] Sickle Cell, but also chronic back pain, joint pain etc.).” A provider observes, “I have seen the misery they [patients] have gone through trying to get proper care and being denied it based on physician fears. I also have seen the success and the quality of life improvements when they finally find a doctor who will take them seriously and is willing to properly manage their pain. But isn’t being in pain bad enough?”



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