NFMCPA: Stigma Persists For People With Fibromyalgia, Chronic Pain Conditions
By Guest Blogger Jan Favero Chambers, president and founder, National Fibromyalgia & Chronic Pain Association
Despite increased awareness, many sufferers of fibromyalgia and chronic pain still suffer societal stigmatization. Why are they displaced and kept in liminality?
Liminality refers to the transitional time when a person lacks social status or rank and remains anonymous, thus threatening prevailing definitions of social order.
In the setting of a chronic pain illness, societal attitudes towards people with chronic pain often affect them negatively, diminishing their former confidence and how they see themselves in society. Liminality is caused by cultural and personal stigmatization.
In his Institute for Chronic Pain Blog, Murray McAllister, Psy.D, states, “the stigma of chronic pain is one of the most difficult aspects of living with chronic pain. If you have chronic pain, people can sometimes judge you for it.”
How Stigma Occurs With Chronic Pain
People with fibromyalgia or other chronic pain conditions are often stuck in liminality purgatory: If they rest or nap because of pain, others think they rest or nap too much; if they are caught crying because of chronic pain, observers become impatient and think they cry too much; if they don’t work because of pain, they face scrutiny over why they don’t work; if they visit a healthcare provider, someone might ask, “Are you going to the doctor - again?”
People with chronic pain conditions might be viewed as taking too many medications and can be accused of having drug-seeking tendencies. Any of these reactions reveal disapproval of how a person is coping with chronic pain. These disapproving judgments propagate the stigma of living with fibromyalgia and chronic pain.
Cultural stigmatization, or disapproving judgment, sometimes is conveyed through disbelief that anyone could suffer the amount of pain described, which then calls into question the legitimacy of resting, napping, crying, taking narcotics, unemployment or seeing a physician. At this point, a chronic pain patient’s personal awareness can integrate this judgmental attitude into their own concepts of living with these conditions, which unintentionally becomes personal stigmatization.
Stigmatization of people with chronic pain conditions can negatively affect interactions with a spouse and family members, friends and neighbors, supervisors, employers and healthcare providers.
It’s Not Visible And It Is Real
Invisibility is one of chronic pain’s most insidious problems. Interviews of patients at a pain clinic reveal that many feel that it would be much easier if they were missing a leg, had cancer, a pacemaker, or something tangible to which others can relate. Because others cannot see chronic pain, it is difficult for them to accept those who experience it, thus leaving people with chronic pain conditions in perpetual liminality.
During Pain Awareness Month in September, let us embrace the reality of invisible pain and acknowledge those who suffer from it, thus ending their social stain and ostracization from society.