The Stigma Of Pain
A description of my interest and experience with pain and related stigma
I think what catalyzed my interest in pain was, of course, my own experience. I was hospitalized for severe abdominal pain, and at the time, I remember the pain was so severe that literally nothing else mattered to me. The problem was, nobody understood that. The aids, doctors, nurses, everyone treated me as though it was a small tummy-ache. It wasn’t until I got loud and half-belligerent that they started paying attention. It shouldn’t have taken that to make them believe me. It then occurred to me that my pain doesn’t occur in a vacuum; pain is a social matter. It affects us as an individual profoundly, but in order to begin to treat or fix the pain, we need others.
One of the problems of having others misunderstand, or not understand at all, about pain is that we develop an internalized stigma. Essentially, we develop attitudes about ourselves and our pain that are a negative reaction and a negative belief, though it is no fault of our own. We believe that others are going to react a certain way to us and our pain, and so we begin to react before they can. We hide it. We mask it. We minimize it. Therefore, we are left feeling isolated and stigmatized. Research shows that a person labeled as a ‘‘chronic pain sufferer’’ may anticipate feelings of devaluation or discrimination and engage in coping behaviors such as social withdrawal. Again, pain is a social matter, and occurs in a social context.
Why, then, do we experience this stigma and confusion? The answer is lack of education. Many, if not most, of the friends, family, and even doctors and nurses, react the way they do because they fear and/or don’t understand what they don’t know. Without being able to physically see or pinpoint the cause of the pain, they have a difficult time believing it’s valid. Further, people in the general population are less inclined to help, feel less sympathy and suspect deception when there is no clear medical explanation for the pain. That, however, does not make the pain less real or less valid. Looking at brain models, it is very possible to tell exactly how the brain and body are affected by pain and how it is truly a physical reaction, NOT just a mental one.
The sad thing is, when others question the validity of our pain, it makes us question our own pain and our own beliefs about pain, which are very real and valid. Once we begin to minimize our own pain, our healing is compromised, from both a physical and psychological standpoint. Data shows that perceived injustice has been related to lower wellbeing, such as depression, poorer rehabilitation outcomes and prolonged work disability in individuals with chronic pain. That’s why it is, again, so crucial that we begin to educate both ourselves and others, so that we can conquer the stigma and negative social reaction and turn pain into something that is still an obstacle, but this time, an obstacle we can overcome!