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In 2000, a truck rear-ended my friend Andrea’s car as she stopped at a crosswalk in a school zone. The truck was going at least 45 miles per hour when it slammed into her. The accident damaged muscles, nerves, and bones from the base of her skull to the bottom of her left leg. It left her with an injured spine, pelvic instability, and significant leg injuries. She has been living with chronic pain ever since.

Andrea rarely takes opioids; she says they make her feel incredibly drowsy and often don’t work well to control her pain.

Yet she frequently experiences intense stigma when seeking care for her pain. Health care providers often regard her pain as a kind of personal weakness. Many of them have told her that “she doesn’t look like she is in pain.” She has lost count of the number of times she has been told that if she just lost weight, her pain would lessen.

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Andrea isn’t alone. Millions of people who live with chronic pain experience intense stigma.

I view stigma as the combination of difference plus deviance: An in-group marks an out-group as different on the basis of a shared demographic characteristic, then judges the out-group as deviant. This is precisely what happens to many people in pain. They are marked as different because of their pain, and then have that pain denied, invalidated, and delegitimized. This is more likely to happen to women and racial or ethnic minorities than to white men.

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Stigma is fundamentally social. Although we often speak colloquially of pain, or illnesses like HIV/AIDS, stigmatizing people, that isn’t correct. It is always people who stigmatize other people. We do this to each other.

Pain-related stigma can come from anyone. Health care providers are a major source of it, but so are intimate partners, family caregivers, insurers, and policymakers. Chronic pain sufferers sometimes stigmatize other people with chronic pain, perhaps because the difficulty of living with such a condition makes it harder to countenance in others. And people in pain sometimes stigmatize themselves. When you are told repeatedly that your pain is invalid or illegitimate, after a while it becomes easy to believe that. People in pain do not have the luxury of denying the existence of their own pain, but they can and do judge it.

That is one of the catastrophic impacts of stigma: It can spoil individuals’ identities, their sense of who they are as persons.

Sadly, stigma is a terribly common problem for people in pain, and has been for close to 1,000 years.

This matters, because stigma is corrosive. Members of groups subjected to persistent stigma get sicker and die quicker. This is partly because stigma is a barrier to care. Who wants to visit their provider if they feel like they will be judged and blamed for their illness, or have their experiences denied or invalidated? But even when they do seek care, stigma worsens chronic disease outcomes.

Why do we attach so much stigma to people in pain? One likely factor is that pain is subjective. This means that the ability to diagnose and treat pain effectively depends in large part on what people say about their pain. That subjectivity is a problem for Western medicine because it is built on the ability to identify physical, identifiable pathologies that can be linked to illness. Most kinds of chronic pain defy this easy objectification, which frustrates the dominant Western framework for knowing and understanding illness. And because chronic pain can’t easily be objectified through clinical tests — blood work, lab tests, imaging, and the like — it is ripe for doubt and skepticism.

Stigma is so deeply rooted in our society that it can shape laws and policies at the highest levels.

Consider the regulations that govern access to Social Security benefits for disability. They say that a claimant’s own testimony is insufficient to justify benefits and specifically require “objective medical evidence” to do that. This doesn’t make sense, since virtually every clinical guideline for treating pain stipulates that a patient’s self-report is the single most important tool for effectively diagnosing and treating pain. These regulations effectively repudiate one of the most fundamental and critical tools for taking people in pain seriously.

The Social Security regulations also explicitly note that evidence from X-rays and laboratory tests such as blood work are forms of evidence that can be used to “prove” a disability sufficient to generate access to Social Security benefits. These regulations systematically disenfranchise most people in chronic pain, who are unable to provide the needed proof via these preferred forms of evidence.

In essence, our basic social safety net channels and reflects the widespread stigma that people in pain experience.

The mention of X-ray evidence in the regulations is especially interesting given the staggering amount of medical imaging we do for nonspecific low-back pain, one of the most common forms of chronic pain experienced by people in the U.S. Researchers can’t find much evidence that this imaging benefits people with low-back pain in any way. Yet doctors order it often.

Doctors alone aren’t to blame. Patients want such imaging, too, as a way to provide testimony that is more valued and seen as better evidence of their pain. People in pain can’t be blamed for wanting medical imaging even if there’s little evidence it helps.

In addition to being bad for physical health, stigma is also morally bad. It is among the most antisocial and alienating experiences humans can inflict on each other. It isolates people, causes suffering, and violates basic obligations to treat people fairly and with dignity. Accordingly, we should intervene to alleviate it.

Like most significant health problems in the U.S., the root causes of stigma are structural. This means that interventions used on the interpersonal level, like anti-stigma education and training programs, are likely to have only limited success. To be successful in reducing the stigma that millions of people in pain endure, we must address the deeper factors driving it, including our tendency to disregard individuals’ narratives and testimony in the absence of “objective” evidence. We must also address the sexism and racism that without a doubt contribute to the terrible and growing inequalities that exist in the diagnosis and effective treatment of people in pain.

One of the most promising approaches to reducing pain stigma is addressing laws and policies that intensify stigma toward people in pain. This might include revising laws at the state and federal levels, strengthening antidiscrimination protections, and enforcing existing laws that aim to alleviate stigma against people in pain. State laws that prohibit elder abuse, for example, can be used to mandate effective pain management.

Changing local policies can also make a difference. The policies of a health system that treats thousands of people in pain can have a huge impact on the extent to which people in pain are stigmatized. These policies include whether we force people in pain to sign demeaning, one-sided “pain contracts” or submit to random drug testing, use language that conveys hostility and suspicion, and countless others that sustain and perpetuate attitudes of doubt, distrust, and disbelief.

While changing federal or state laws takes time, local policies can change far faster. We could, for example, change or abandon commitments to policies and protocols that entrench and legitimize the tendency to stigmatize and doubt people in pain. We can implement policies and procedures that detail antidiscrimination requirements specifically for people in pain. And we can enact policies that govern discriminatory language and terms often directed against people in pain — like hysteria and malingerer — which have long and documented histories of being used to stigmatize vulnerable people in pain.

To alleviate pain stigma, we also have to decouple it from the stigma directed toward opioid use. While these two types of stigma often occur in the same spaces, they are not identical. We stigmatize people in pain, like my friend Andrea, who neither take nor desire opioids. And we stigmatize individuals who take opioids even if they do not live with chronic pain. A focus on opioid stigma is welcome and important, but it is not equivalent to intervening specifically to address pain stigma. Both of these terrible burdens deserve our attention and efforts.

We have tools to effectively and fairly treat people who live with chronic pain. We have the power to help them live better. We should do so, and without stigma.

Daniel S. Goldberg is a faculty member in the Center for Bioethics and Humanities at the University of Colorado Anschutz Medical Campus, associate professor of family medicine at the University of Colorado School of Medicine, and associate professor of epidemiology at the Colorado School of Public Health. He is the principal investigator of an epidemiologic study related to addiction stigma funded by The Well Being Trust, a 501(c)(3).

  • Re: “She has lost count of the number of times she has been told that if she just lost weight, her pain would lessen. ”
    Hey wow, if that’s how it works then maybe my autism would lessen if I lost weight!
    Wonder how much I need to lose, let’s see, I weighed 8 pounds when born and I now weigh 206 so I need to lose 198 pounds to get back down to 8 pounds.

    As it happens, I was diagnosed about 15 years ago with fibromyalgia and CFS/ME: at that time I was 5ft 11in tall and weighed 145 with a 32 inch waist.
    If I GOT chronic pain at that weight and ‘string bean’ body build just what weight would I have to achieve to “lessen the pain”?

    • Scott – I’ve been a CPP for 11 years, and have endured plenty of stigma.

      But, as to your comment — I dont’ know how overweight the person you’re referring to is, but it is known that far too many Americans are severely overweight, and that the extra weight is hard on knees, back, etc.; aside from a strain on one’s heart, increased risk of diabetes, high cholesterol and BP, etc, and I’m sure more bad affects on health than I know about.

      (Plus, when obese people need help to get out of bed, to the toilet, and just to get around, it’s much much harder for caregivers to safely provide such assistance, and tons of nurses have hurt their backs due to this, even being forced to go on permanent disability and so becoming CPP’s themselves)

      And so I wouldn’t have a knee-jerk reaction to a suggestion about weight.

      Actually, at 5’4” and about 100 pounds, I was told to gain weight for my bone health, so that when I walk — a very rare event because my pain forces me to be incredibly sedentary and such rare walking (mostly when doing errands) is my only exercise– there will more weight bearing down on my bones.

    • Re: Cindy Too, “And so I wouldn’t have a knee-jerk reaction to a suggestion about weight.” So, are you saying I’m having a knee jerk reaction, what other logical reason is there to post that statement in reply to my post?
      Wow, you say you are a CPP, chronic pain patient, and then you go on and be just as judgemental, ignorant, and ableist, as anyone who is clueless about such things. And speaking of nursing, search out Jennie Lund School of Practical Nursing, which was once at Independence Sanitarium & Hospital, then brainstorm why I might know of it.

    • Scott,
      Attack me and call me names if it makes you feel better.

      I’ve been in agony for 11 years; on disability; extreme pain which makes me barely able to move, which is bad for my heart health, bone health, etc, and as I said, I was advised to gain some weight b/c I was underweight.

      I’ve lost friends and even family who can’t understand why I can’t just “get over it”. And I’ve been tossed out of pharmacies and fired by a long-term doctor due to a false-positive lab test which she refused to even consider the possibility of error. So, plenty of stigma.

      I try not to judge anyone, including overweight people — and in my 20’s, I was quite overweight for several years and so I know what that’s like too.

      So, that’s my history. And it is not deniable that being very overweight causes all sorts of problems, no matter what you’d like to believe.

      I have no intention of engaging you any further and will not fling insults at you, no matter what you fling at me.

  • After experiencing pain from stage 1 level 2 breast cancer, and an estrogen-blocking drug, I have a LOT of sympathy for those in pain, like never before. I even screamed at my pharmacist to give me just one pain pill, one day, when I couldn’t stand it anymore, and two doctors, and two dentists had turned me down. It’s the truth.

  • Dr Goldberg makes cogent and worthwhile observations , though I personally think he doesn’t go far enough. At present, the stigma levied upon pain patients who are prescribed opioids is compounded and promoted by thoroughly wrong-headed government policy and legislation at all levels from local through Federal. I say “wrong-headed” because such policy is clearly based not on medical evidence or scientific data, but rather upon biased opinion and unsupported mythology. I have written elsewhere on STAT concerning the need to stop persecuting doctors for legitimately prescribing opioid analgesics. It’s time to stop persecuting and deserting patients too.

    With regard to the demeaning use of urine testing and patient contracts, there is an additional injury added to insult: false alarm rates in urine testing are high enough to cause the unilateral discharge (and stigmatization) of hundreds of thousands of patients. No urine test should EVER become a justification for patient discharge. When patterns emerge that a doctor finds concerning, it may be appropriate to increase oversight or refer a patient to an addiction specialist; but in any rational world, such referrals will be rare except among patients who already have a history of substance abuse when they are first seen by the doctor. Dr Nora Volkow, Director of NIDA tells us that there simply is no predictable relationship between opioid prescribing and addiction.

    With regard to the hype and nonsense surrounding “risk assessment” for patients treated with opioids, a circulated draft report (October 2019) from the Agency for Healthcare Quality and Research reveals that no profiling instruments now available have any serious degree of predictive accuracy in identifying patients who have elevated risk of dependency, addiction, opioid misuse or mortality. NONE. AHRQ carefully avoided drawing the appropriate conclusion from this analysis: namely that detection of people who may be diverting opioid medications to non-medical use is practically impossible, and SHOULD NOT be used as a policy excuse for restricting availability of opioid pain relievers to chronic pain patients.

    Finally another dimension of stigma: anti-opioid fringe element crazies in groups like PROP have been trying for years to invent studies to “prove” that opioids aren’t effective and that they are “over-prescribed” to patients who claim to be in pain. These efforts have uniformly failed when the medical evidence is looked at fairly and in detail.

    Dr Nabarun Dasgupta and his colleagues examined an entire year of data on prescribing and opioid related mortality for the State of North Carolina. They found that opioids were prescribed to over 22% of all NC residents in that year — but “there were 629 overdose deaths, half of which had an opioid analgesic prescription active on the day of death. Of 2,182,374 patients prescribed opioids, 478 overdose deaths were reported (0.022% per year). Mortality rates increased gradually across the range of average daily milligrams of morphine equivalents.”

    As Dr Dasgupta has shared with me in private correspondence, what this work doesn’t demonstrate is any cause and effect relationship between prescribing and mortality. Because there isn’t any and 20 years of published CDC data prove it.

    The higher mortality rates associated with higher opioid doses may plausibly be associated with the greater severity of medical conditions that are most commonly treated with higher doses — not with opioid exposure per se. Moreover, the idea that prescribing causes rapid addiction and greatly higher mortality risk is an outright lie. As I have noted in much of my published work, opioids are prescribed six times more often to seniors over age 62 than to youth under age 19. But overdose related mortality rates in youth are six times higher than in seniors. Thus prescribing did NOT create our opioid crisis and isn’t sustaining it. And people who claim a connection should be required to trace the entire “trail of breadcrumbs” to prove their case. Absent such proof, they should resign their positions as supposed “authorities” on anything involved in these issues.

    • I’m so glad that Richard Lawhern addressed urine tests.

      My false-positive was one of the most stressful, terrifying events of my life. Stressed and terrified that I would not be able to obtain another doctor, and that I would not be able to obtain more opioids which were the only thing keeping me from suicide due to my horrific chronic pain. And that my disability insurer would use that as reason to stop paying my claim.

      Here is the fun story:

      A few years ago, my then-pain-manager “fired” me b/c supposedly my latest opioid tox screen indicated very high alcohol content — even though I hadn’t had any alcohol in years except for chocolate liquor contained in chocolate chips.

      She didnt even have the courtesy to tell me I was fired; I never received a written notice. I only found out when I called to make my next appt and was told that I was no longer a patient. Stunned, I said that yes I was a patient; of course I was.

      Then I was told that no I was not and that I’d been discharged. I was beyond stunned. When I asked why, I was told about this tox screen. When I said that it was wrong for one reason or another — lab error or some other kind of mixup (especially possible given the horrific disorganization of this office such as frequent lost appts etc) — when I offered to come in that minute and do a tox screen, I was told that I could not. When I pressed, crying hysterically on the phone and begging — begging — and insisting that the doctor must speak to me, I was told that she would not, and that if I showed up at the office, I would be escorted out by police.

      She refused to even consider the possibility of error, which is mind-blowing. Plus, the false positive was for alcohol and not her prescribed opioids, and yet she just couldn’t wait to get rid of me.

      Guilty w/o a chance to prove my innocence. Treated like a criminal.

      After this horrible treatment, I was terrified that I’d never find another pain manager. Fortunately, I found a much better one, and my present doc told me that he would never discharge a patient the way my former doc discharged me — esp as I’d been seeing the former doc for several years with no problems. Until I found the new doc and met him and told him this saga to explain my records, and heard his reassurances, I was a total basket case.

      To top things off, when I changed docs, the evil one’s office refused to send on my medical records, even though legally they belonged to me and that refusal violated the law. After my multiple requests failed, I finally contacted the state medical board to gain compliance.

      But, their failure to send the records could have been just one more example of their incompetence; the type of incompetence that led to my tox screen fiasco. Because, in the past, when I needed them to send records to me for another doctor in another state, it took them 3 times to send the right records.

      And, with the third package of records, needed solely due to their 2 prior errors, they enclosed a nasty note stating that this would be the last time. Luckily, that time they finally got it right, so I didn’t have to go to the state medical board to get the correct, requested records which they legally were required to send upon my request.

  • This stigmatization did not happen by accident, it was profitable for the insurance, pharma and medical industries. The false narrative about “unnecessary imaging for low back pain” is another misleading false narrative meant to blame patients. There are plenty of cases, where this “unspecific low back pain” was cancer or a serious injury. In other countries, an MRI costs about 70$, here in the US, it is thousands.

    Health Data told us there would be even more chronic pain as the population aged. Clever industry insiders, ensured that workplace injuries, ergonomics, and aging blue collar workers would not be counted or studied. They made sure that no agency would track any of this, that way they could create a culture of blame and denial. The corporations that profited from all of this, whether it was the insurance denials, pharma, or the medical industry all spread these lies and propaganda.

    The FDA hid thousands of defective device reports, to protect the industry. These medical devices were sold in the ER, while patients were on the table. When these patients reported adverse events, they were shut down and blamed, if the defective devices caused pain. They secretly removed thousands of defective devices from surviving patients. The number of deaths, infections, and adverse events, from these defective devices were hidden, to protect industry profits. Patients who went through multiple surgeries, infections and years of pain, had to be silenced. That was if they survived. They performed these surgeries on nursing home residents, after all Medicare paid for it all. A corrupt Congress, and their industry lobbyists made sure that Medicare could not collect the data. Physician lobbyists made sure that none of this data could be collected in the EHR, or by any agency.

    These corrupt industries even paid psychologists to how the patients were to blame, when they reported pain. All they had to do was create doubt, and blame the patients mindset or lifestyle choices. They created lots of biased research, and even made up words, like “catastrophization.” A patient describing pain to a physician could now be told they were catastrophizing, which was worse than the reported pain.

    This is a product of corrupt For Profit Healthcare, and unregulated capitalism. They turned a public health issue into a profit generating scheme, because it was profitable. In a nation full of alternate facts, lies and propaganda, they had to create a a scapegoat for the Epidemic of Despair. Sick people are a great scapegoat. The FTC no longer regulates deceptive health advertising and desperate people in pain were good targeted marketing. They sold everything from spine surgery, alternative medicine, off label pharmaceuticals, and prayer. TV doctors sell ointments on late night TV, while the daytime TV shows peddle false cures. The suicides continue to spike upwards, while the word pain is censored. Industry funded psychologists, claimed that just mentioning pain to a physician would make it worse.

    Ar least it was profitable! We just don’t count the dead!

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