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NFMCPA: Stigma Persists For People With Fibromyalgia, Chronic Pain Conditions

2014 September 9

Jan-ChambersBy 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.

7 Responses leave one →
  1. ismael cotto permalink
    September 11, 2014

    do you have this information in spanih

  2. ismael cotto permalink
    September 11, 2014

    need spanish literature

  3. October 21, 2014

    Just want to Thank u so much for creating this blog. It’s great to know that this is a topic that needs so much attention. Chronic pain is real and will not go away. All we can do is try to manage it so that we can have some quality of life!! This is a subject that I am passionate about. My story is that I was involved in an elevator accident in 2004 and became permanently disabled Workers comp as well as SSDI approved me as permanently partially disabled then why is it so difficult to get the pain medication that is required to treat the chronic pain that I deal with daily. The stigmatization that u feel when u bring a Rx into the pharmacy. The way ur request is scrutinized is very embarrassing. I have tried to wean off pain meds and tried suboxone. It did help with the pain but it is not FDA approved for pain. It however causes dependency just as opioids if not worst and the bad thing about it u get very little help from the prescribing doctors. Pain management doctors are very reluctant to prescribe the correct dosage to be effective because of the DEA guidelines. I feel that if a patient is complying with the rules regarding urine testing and keeping appointments they should not be made to feel like an addict. This situation is very depressing while dealing with the chronic pain. We with chronic pain need a platform. It is so unfair to be made to feel like a leper due to something that u have no control over. Before my disability I worked for 30 yrs. I can no longer work due to the pain and depression. I left work a Manager in the Healthcare field. We need a voice and a platform. We need a way to take back or dignity and our respect. Only through unity can we make a difference!! There is an ACT that was put in place to protect and be a voice for Americans with disabilities (ADA). Where is their voice in all of this!!

  4. October 21, 2014

    Hi I have a question based on my experience recently. I have recently moved to Florida from NY to get away from the cold weather due to the chronic pain. I am currently seeing a pain Mgt doctor and recieved a RX for oxycodone. When I took the Rx to my neighborhood Publix pharmacy I was told they r not taking any new patients who r prescribed opioid meds. Is this permissible or a form of discrimination against people with disabilities. This is scary that u can be treated but can’t receive the medication u need to treat ur condition that a doctor prescribes. Is ther anyone that we can contact regarding this type of situation?

    • Allsup permalink
      October 22, 2014

      Hello – This sounds like an issue that your state offices may be able to help you with. You could try contacting the Florida Department of Health at (850) 245-4444. Or, you may want to contact the Florida Board of Pharmacy, which oversees pharmacies in your state: FloridasPharmacy.gov.

  5. October 28, 2016

    Found you through your article on stigma mof FM & chronic pain, thanks for writing and posting. So many are not convinced stigma is still quite prevalent, in 2014/knew of at least 2 states use DX codes for Fibromyalgia as “psychosocial disorder”, and given VOLUMES of books & article s on st

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