A Pained Life: Stop Torturing Us
/By Carol Levy
For many chronic pain conditions, such as Complex Regional Pain Syndrome, trigeminal neuralgia and Ehlers Danlos Syndrome, a major aspect is the spontaneity of pain attacks. They can come at any time and without warning.
Not being able to anticipate a pain flare may sound familiar to you. It causes psychological stress, keeping you in a constant state of fear and anxiety. The lack of predictability deprives a person of any sense of normalcy or control over their situation, causing helplessness and despair.
That often leads to other health problems and interrupts the sleep cycle, causing fatigue, disorientation and even cognitive decline.
Where did this description of chronic pain come from?
It is actually a description (with some word modification) of torture and how disruptive it can be to a person. It’s striking how similar chronic pain and torture can be.
Having chronic pain is torture to me in an abstract way: I have pain. I can't find a way to stop it. I suffer as a result.
Like pain, torture is worse when it arrives unexpectedly and you have no way to stop it. You may be feeling okay, when suddenly a blitzkrieg of pain invades. You have no control or defense, and have no choice but to wait it out, cowering under the covers waiting for it to pass.
The Center for Victims of Torture writes this about using unpredictability as a torture technique:
“Randomizing torture makes it even more psychologically damaging and ethically problematic, as it deprives the victim of any control or predictability.”
Too often doctors miss the ethical implications of the effect of the pain on us, much less when one aspect of it is the unpredictability. The need for them to understand it is a necessary component of taking care of us and our needs --- what a physician, in the truest sense of the word, should do.
Too many of them, even those who claim “pain management” as their specialty, seem to get tired of listening as we explain the various ways our pain manifests. Most pain conditions don’t have a nice clean orderly way of detail.
It can be torturous to deal with the medical profession and its reluctance to accept our stories about living with chronic pain. It is harder still when a patient has the additional spontaneity of pain, being repeatedly physically and psychologically bombarded by it, and their defenses on the verge of being destroyed.
Doctors don’t seem to be able to understand this on their own. We may come to them psychologically tattered because of the pain. Those of us with spontaneous pain may come to them appearing very emotionally fragile.
As hard as it is, as difficult our lives already are due to the pain, we may have to be the ones to teach them, to help them to understand why we are so torn and battered. At the end of the day we need to tell them: “Please, listen to me. Understand me. Please, don’t be another level of torture.”
Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.” Carol is the moderator of the Facebook support group “Women in Pain Awareness.” Her blog “The Pained Life” can be found here.
