STUDY: Terminology around Chronic Pain “Stigmatizes and Marginalizes” Pain Sufferers

STUDY: Terminology around Chronic Pain “Stigmatizes and Marginalizes” Pain Sufferers

Words matter.  And a new commentary published in the Journal of Pain Research says words matter – a lot.

In the commentary titled, “Terminology of chronic pain: the need to “level the playing field” lead author Dr. John F. Peppin says, “Terminology matters, yet little attention has been paid to the terms we use to categorize and diagnose our chronic pain patients.”

“Clinicians and society as a whole need to appreciate language’s potential to further stigmatize and marginalize all patients suffering from chronic pain, and accordingly we are obligated to work toward a more language-neutral system of pain classification,” the publisher of the commentary, Dove Medical Press, stated in a press release.

“’Chronic cancer pain’ and ‘chronic non-cancer pain’ are replete in the literature; however, the distinction here is actually obscure. A patient with pain from a cancer etiology has no different physiology than a patient with pain of non-cancer etiologies. These terms are primarily philosophically based, rather than medical and physiologic. Pain mechanisms do not discriminate between cancer and non-cancer in pathophysiology. Therefore, we suggest that the terminology be changed to help us to better understand and treat all of our chronic pain patients who are suffering,” Dr. Peppin added.

“Perhaps a more prudent, less emotionally and philosophically charged set of terms would indicate the origin and generator of the pain, e.g., a patient with chest wall pain from radiation due to breast cancer would be labelled, ‘Chronic pain of breast cancer radiation treatment origin,’” he said.

The published commentary concluded with the following:

“The goal here is to continue to be patient-focused, relieve their suffering (instead of contributing to it), and help improve their lives. Language, in and by itself, is obviously not a “cure” for pain. However, clinicians and society as a whole need to appreciate language’s potential to further stigmatize and marginalize all patients suffering from chronic pain, and accordingly we are obliged to work toward a more language-neutral system of pain classification.”

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Authored by: Staff

There are 16 comments for this article
  1. Richard A. Lawhern, Ph.D. at 1:29 pm

    Not to hijack this discussion thread, but you’re welcome, Jean, and thanks for the acknowledgment. I presently provide research and personal support to about 15,000 chronic facial pain patients and family members in 11 groups on Facebook, with a primary focus on trigeminal neuralgia and facial neuropathic pain. My wife has dealt with those issues for 20 years, and I’ve been writing websites and doing online research and analysis for the same period. Feel free to look up my website at google. It’s called “Giving Something Back”.

  2. Jean Price at 11:25 am

    Richard….What a generous acceptance of my apology! I truly respect and admire your philosophy of accomplishments and being credited for your work. It’s so refreshing to find people who work for those of us in pain. The gifts you offer of understanding and compassion and research are priceless. I hope you can continue to champion the truth of chronic pain, especially in a time where it feels lost in the medical community, our government, and even the general public. I wish you well and hold your goodness in my heart!

  3. Richard A Lawhern at 5:32 am

    No worries, Jean. I have worked with pain patients long enough to understand the distractions of such challenges. And I’ve tried to do a lot of the work with the idea in mind that one can accomplish almost anything if we don’t care who gets the credit. It’s about you and others like you, not about me.

    Go in Peace and Power
    Red Lawhern

  4. Jean Price at 10:00 pm

    Sorry, Richard Lawhern…I mistakenly attributed your work with suicide rates and psychogenic pain diagnosis to Dr. Holly Clowers!! I apologize to both of you…and can plead only my own pain distracting me while I typed my comment! If you haven’t already read my comment regarding this and could use a compliment, you’ll find one there. And Holly, speaking out by telling your experience is so important also. It adds another voice to the cry for change to help us all. Thanks to you both.

  5. Anne Fuqua at 11:00 pm

    The language we use contribute so much to what others feel about what we are talking about. even when it’s subtle an unintended, certain terms can serve to minimize, invalidate, or even malign the pain sufferer. While other terms evoke evoke sympathy and unconditional acceptance.

    Cancer is the best example I can think of personally. Generally oncology patientsdo not have to prove that they are in pain city medicated nor must they defend their need for medication to friends and relatives. On the whole, cancer is seen as an innocent diagnosis where the patient is a victim of a horrible disease. This is absolutely true, but it fails to take into account the fact that lifestyle factors also play a role in cancer just like they do in other diseases. Health care providers are focused on maximizing quality of life and reducing pain. seldom do they make the patients feel guilty for “how they got in this position”. they’re exactly right to do this they’re treating the patient not blaming the patient. This is not to say that they should not encourage healthy lifestyle factors that will promote the patients ability to fight cancer and prevent recurrence and other sequelae of the patient’s poor health habits such as heart disease. however this is most commonly approach from a positive, compassionate point-of-view. I’ve seen this happen with patients who had cancers clearly tied to substance abuse such as liver cancer as a result of hepatitis C. the situation is entirely different though if the patient say has hepatitis C that’s causing issues but they don’t have cancer. I’ve seen a completely different attitude towards these patients. It’s made clear to them that their problem is one of their own doing. A second example is a smoker with lung cancer versus a smoker who is having issues with bronchitis. A patient who is overweight, is often told that their problem is their fault because they eat too much. While this may be true, it would seem that we can approach this person with the same compassion with which we approach the cancer patient. This doesn’t mean giving the patient a pass and not expecting them to accept responsibility. It just means that they are given a supportive environment and encouragement to make positive health changes. Lastly you look at the chronic pain patient. it often seems like Dr and other health care providers are looking for a reason to blame the patient for their pain. If they can find a reason to blame the patient for their pain, they often use this as an excuse not to treat the pain. an example of this would be the Ringling Brothers circus performer who was refused opioids because he was told he was “asking for it” because of all the stunts that he performed. but then if one of our gridiron heroes aka football players (BTW I love football!) is injured, they are seen as a hero and their pain tends to be treated aggressively. These are just a few examples. Pain is pain. It is neither moral or immoral. We must move past this puritanical attitude towards pain where only cancer pain is seen as moral and treated aggressively. The belief that chronic pain should be borne and coped with using non opioid strategies is archaic. We move past that many years ago, yet we re entering the cavemen days of pain management. Non-medicinal and non-opioid measures should be tried first. If we are the compassionate society we claim to be, we should not withhold up opioids from chronic pain patients who have failed first line non-medicinal and non-opioid therapies. Many of these simpler treatments will show efficacy once the patient has a basic level of patient pain control.

  6. Holly Moore at 5:56 pm

    I live with chronic pain and have for several years as I’ve had osteoarthritis that started in my teens and it effects just about every joint. I’m 45 y.o. and have had knee replacement already. I hope something can be done about the stigmas associated with pain management and use a more accurate, non demoralizing way to treat my issues and give me some sustained relief. All I get is “use pain management” even from the osteoarthritis specialist that I visited for the first time today. Nowonder so many people commit suicide from chronic pain when being chronically treated in such a demoralizeing way. I already take antidepressants and have had years of bad news from my condition and I’m sure not drug seeking but I sure do feel like that’s what each specialist I visit has already accessed about me before I see them. I’m not sure what the best approach is to change doctors thoughts on chronic pain but I’m very happy someone is trying to make headway in this area. If some of these doctors could experience a week of my life and know what loosing everything you’ve worked so hard to accomplish in life just disappear then just maybe they would have some empathy.

  7. dave at 9:18 am

    I agree, words do matter. I often take issue with the term “patient centered” or “personalized” medicine and “catastrophizers”- as obviously these terms are used to deceive and to demean people. Patient- centered is used often by pain specialists to deceive people into thinking their personal concerns will be respected. And interesting how Dr. Fishman in his book on pain points out how insensitive pain specialists can be to people in pain.
    As too much of the health care industry treats symptoms or diseases- and not the people that happen to be attached to those symptoms or diseases- they too often engage in violent abstractions of the persons seeking their “care”. These violent abstractions can take the form of diagnostic bias, derogatory terms, stigma, insults, etc. I think the use of a problem oriented medical record would serve people who seek medical care better-then our current label based care. And a greater sensitivity to the effect of labels and words is needed.
    Im glad that Mr Peppin has taken tht time to raise these issues- as has Terri Lewis. We could use a more critical and a more conscious approach to pain care then we have now.

  8. Teresa Haney at 7:13 am

    Chronic pain sufferers, we just get a bad rap all around. I was so disappointed in Shonda Rymes TV show how to get away with murder. The main character was shot and of course anyone who takes pain meds becomes addicted. They portrayed her as being “out of her mind” on vicoden. It just infuriated me. I felt like it was a slap in the face to all of us. I’m so tired of the way media portrays us. I for one have never been out of my mind hallucinating from my pain meds. I absolutely can not function without them. I have arachnoiditis. Its bad enough it has robbed me of a normal life. Can’t I watch a TV show without being stigmatized and belittled. I use TV to take my mind off the pain. It just felt like a personal attack on pain patients. Shame on you shonda Rime’s.

  9. Richard Oberg M.D. at 1:17 pm

    It was decided that falsely shouting fire in a crowded theater was not protected speech under the first amendment. Words and phrasing are now commonly used to evoke particular reactions in large groups of people without reason and cause harm.

    Jenny McCarthy, who’s major scientific accomplishments include ‘playmate of the year’, single-handedly called into question THE most successful disease prevention strategy in the history of medicine (vaccinations) requiring a concerted push-back.

    Imagine now a handful of medical busybodies and bestow special authority to them with oft misused words such as ‘professional’, ‘expert’, ‘authority’, etc.; add a touch of political/media access unavailable to others, and the result is sensationalism and harm without regard to those consequences (access to medication) that don’t concern them.

    I’m a pathologist who (unlike an administrator/medical politician) diagnosed lots of cases on a daily basis, did autopsies and some medical examiner work early in my career, gave legal depositions, and was involved in helping clinical management of patients for 30 years – what makes me any less an expert than the people who signed PROP 2012 or its more recent CDC iteration?

    Robert Twillman posted a devastating rebut to PROP 2012 as did I in the recent CDC guidelines public comments section – do those words matter or not? Read the obtuse wording of the CORE group guidelines to the CDC and notice the key words that matter, are stated repeatedly, and have absolutely no meaning – ‘most’, ‘large’, ‘many’, ‘experts, expertise, etc’ (stated 105 times), ‘concerns’, ‘contextual’ (when out of context), ‘some’, ‘suggest’, ‘should’, ‘noncancer’, ’empathically’ (love that one), and finally – ‘epidemic’.

    Medical decision making is not based on a majority positive therapeutic effect nor is it based on a majority negative side effect profile. Policy position statements riddled with psychobabble, contradictory wording, wishful assumptions, and uniform confirmation bias error would end much of medicine as currently practiced. Very little medical treatment would stand up to this type of word salad scrutiny and those who sign their name to it should be held to the highest levels of accountability.

    Words most certainly matter – it’s frightening that something which would not meet most standards for publication in a high quality peer reviewed medical journal was nearly pushed through as public policy (and still might be?).

    The sheer volume of words is intended to intimidate physicians out of prescribing opioids altogether.

  10. Jean Price at 12:10 pm

    Dr. Clowers….your information on psychogenic pain labeling and the increased suicide for these patients gives a staggering portrayal of the dangers people in pain face. I believe labeling is often a sign of lack of a true diagnosis, lack of empathy, and lack of discernment capabilities in many of today’s physicians. So few doctors do any type of physical examination where they actually touch the patient! I once went to a pain “specialist” who gave me a scathing report judging me to have psychological issues causing my escalated pain, but he didn’t really evaluate my pain. I had a raging headache that day, besides my chronic back and neck pain and Rheumatoid Arthritis, and he was sitting on a low stool off to the side while I was sitting unsupported on the bed. I couldn’t look down at him because it increased my pain enough I became nauseated. One of his comments was I didn’t make eye contact for a lot of the visit! But he never considered my obvious pain and the reason. I felt he was so off base, but I wanted a see a psychologist to assess my emotional state …. and see if this was indeed impacting my pain and the escalations. If it was, I needed to know! After three sessions, she said she really couldn’t medically justify seeing me further because she could find no areas of concern, no areas to treat. She said she felt the doctor was maybe having a bad day himself! She also told me she believed I was a person who would seek the truth and I could come back if I ever felt out of control, but she felt I was handling my pain and the lack of function well. She urged me to write a letter calling him to account for this, yet I was having such a flare up all I wanted to use my energy for was healing and relaxing (and the many other modalities I use besides pain meds!). I had not gone to the pain doctor seeking meds. Yet he had nothing but judgement and heartache to offer me. The counselor said her letter to him would reflect both her surprise and displeasure of his labeling, and caution him about the hurt this generates. I am fortunate to have the tools to help deal with the social and mental and spiritual aspects of life with pain. I had received so much help from a job I had dealing with grief and loss and aging, BEFORE pain entered my life. If I didn’t have this and my faith, I would have been truly devastated by his labeling. And the hilarious thing is, he never examined me! He would not have known if I had the end of a pitchfork imbedded in my back! (I only have screws and a rod, as it is!). He never even assessed my range of motion or my strength or lack of sensation. Sadly, he’s not the exception. Many doctors neglect any type of physical assessment and treat test results, not the patient. So labeling takes the place of a clear and correct diagnosis. The percentage increase in people who have been pushed over the edge by this is appalling! I’m so glad you are fighting this for us. We don’t often have the energy or the ability to advocate strongly for ourselves and others in pain. And certainly not your expertise! Thank you. Perhaps grief and loss programs for people with chronic pain, and any chronic life limiting illness for that matter, would help those statistics. The physicians would do well with refresher courses on this also. But it takes some one speaking up to get the ball rolling. Thank you for championing change for those with chronic pain. We so need the help.

  11. Holly Clowers M.D. at 8:00 pm

    Words do matter. The word “addiction” has been linked in the public eye to the words “chronic pain.” Now that there is a powerful connection, addictionologists (like the ones who wrote PROP and the new CDC guidelines) are suddenly in charge of policy regarding chronic pain treatment? Putting providers with a major interest in addiction in charge of making recommendations for treatment of chronic pain patients is like putting pedophiles in charge of preschool–is anyone surprised at the result? They should be in charge of making screening and treatment recommendations for addiction. Many pain management clinics are covertly practicing addiction medicine, having identified all their patients, incorrectly, as addicts. I was treated inpatient for depression before my primary physical illness was diagnosed. I’ve seen what happens to addicts in treatment. They are blamed for their illness and blamed for their behavior. Is it any surprise that physicians treating addiction would blame chronic pain patients for their pain and blame them for being ill? Patients in pain need caring providers, not someone who will treat them like an animal or worse.

  12. Candice H at 11:31 am

    Having chronic pain was diagnosed years ago as having constant pain for longer than I believe 3-6 months. Everything that happens to us past that point is acute attacks of pain. I’m never a 2 or 3 but have learned to live with it. In my case I’d like to do more than just live but the medical world believes that a chronic pain patient wanting to try different types of pain meds to see what works best is disgusting and just like street addicts. I would just love to never put a patch on or a pill in my mouth again for pain but to be a mom to a disabled young man, I have to function. I just don’t understand why it’s such a battle and must be a shaming situation. I just want to be a good mom and not be afraid as my pain management appt nears each month. I now see why some folks opt to end this chaos of roller coaster rides.
    What happened to doctors measuring a patients depression during a visit?
    I’m asked more times if I want an injection and never if I’m feeling sad.

  13. Cheryl suppnick at 9:23 am

    I believe the chronic pain 1-10 pain scale is different than
    Lets say—–breaking a bone, surgery, having a baby Pain scale.

    Chronic pain is always at least a five. So when a health care professional is quizing your pain level. Remember your constant pain is always at least a 5 and it is like a earth quake rector scale. Nerver goes up just by a single didget. People without chronic pain just don’t get it.

  14. Terri Lewis PhD at 9:20 am

    I believe we need to elevate this issue. Words matter. We also probably need to ‘rate the media’ on their use of stigmatizing language.

    Whadda ya think?

  15. Jean Price at 8:18 am

    Terminology does matter! Think of the difference in saying…what did you do to yourself versus what happened to you! Or the difference between saying …..I put my mother in a nursing home versus I found a place to meet all of my mom’s care needs. So different in what they convey! As for pain, I once was told if I had terminal cancer, I could receive any number of pain meds….whatever I needed. But since I didn’t, my medications would have limits. Basically what I heard was that because I was not dying, I would have to live a long life with uncontrolled pain! Pain has always had a stigma attached to it. Old dictionaries talk about pain being punishment. And there are tee shirts about pain being weakness…leaving your body! If that were true, many of us would be like Hulk by now! And we’d be pain free! I applaud any and all efforts to address the terminology of pain. Even chronic has its own social implications of being about malingering and giving up. We certainly need to take a good hard look at the words used when talking about long term pain. It just might change things for the better!

  16. Richard A. Lawhern at 6:09 am

    As a 20-year advocate, research analyst and writer for chronic face pain patients, I daily see the stigmas that improper pain terminology creates against this population. In my personal view, a related and even more destructive term which is too often applied to chronic pain is “psychogenic”.

    The basic concept behind this term is that pain can supposedly originate in the psychology or thinking of the patient. The broad practical impact of the term is that physicians who use it, in effect write off their patients as “head cases”. When such a term appears in a patient record, their difficulty in being taken seriously by subsequent medical professionals is multiplied several-fold. Dealing with horrendous pain, depression and social isolation already, they must now cope with being discounted as observers and reporters of their own conditions. They experience not only stigma, but outright refusal of both family and professionals alike, to take them seriously. Such refusals can and do contribute to hopelessness and in some cases suicide.

    I have written of the association between the term “psychogenic” and patient suicides in an article published online at the Global Summit for Diagnostic Alternatives, a joint initiative of the American Psychological Association’s Society for Humanistic Psychology and the British Psychological Society’s Division of Clinical Psychology. I offer compelling evidence that by the simple assignment of this term, physicians contribute to a 250% increase in risk of suicide among their patients — independently of other pain-related medical conditions that the patient deals with.

    see http://dxsummit.org/archives/1002 [“Psychogenic Pain and Iatrogenic Suicide”]