Stigma: Opioids, addiction, and chronic pain

Stigma: Opioids, addiction, and chronic pain

Editor’s Note: This is the first in a two part series on the stigma of chronic pain. This focuses on the chronic pain patient. The second installment features the stigma of being a pain physician. We invite your comments.

These are challenging days. Persons who suffer with chronic and intractable pain are facing widespread public misunderstanding of the difference between physical dependence on a drug to treat addiction and a chronic illness.  

Terri A Lewis, PHD

Terri A Lewis, PHD

Physicians and policy wonks are just as confused. Prescriptions are reducing but deaths are increasing. Despite the fact that addiction in persons with chronic pain is consistently reported at less than 4% of the population of patients, many fear that anyone taking opioid medications is at risk for addiction, leading to behaviors associated with overdose, suicide, or other negative outcomes. Physicians who prescribe for complex patients are being stigmatized by their peers as ‘aberrant prescribers.’  

The selective misapplication of scientific reporting is leading to the revision of treatment protocols using addiction guidelines. Some consumers successfully rely on protocols that use a combination of nonpharmacological methods or medical marijuana where available. It should go without saying that most consumers who depend on controlled substances for palliation are restricted by choices related to payor sources, or have failed many prior treatment protocols, settling on prescribed opioids used alone or in combination with other adjuvants.  Consumers who find themselves facing removal of successful treatment protocols without alternatives, legitimately fear that the public cure for addiction will force out individual consequences and treatment more harmful than the use of controlled substances.

The language we use frames what the public thinks about substance use and recovery. It affects how individuals think about themselves and their own ability to effect change or assert control over treatment outcomes. It is important to clearly understand the terms used to describe this problem.

Addiction is a neurobiological brain disease that has genetic, psychosocial, and environmental factors.  It is characterized by one or more of the following behaviors:

  • Poor control over drug use
  • Compulsive drug use
  • Continued use of a drug despite physical, mental and/or social harm
  • A craving for the drug

Chronic pain is pain that results from a discrete event, that lasts for more than 90 days without resolution. It ranges from mild to severe and is in many cases, associated with a progressive underlying disease process. Intractable pain is distinguished by measured changes to one or multiple organ systems that occur as the result of prolonged, undertreated chronic pain.  

Physical dependence is the body’s adaptation to a particular drug. In other words, the individual’s body gets used to receiving regular doses of a certain medication provided for a specific and legitimate purpose. When the medication is abruptly stopped or the dosage is reduced too quickly, the person will experience withdrawal symptoms while the purpose for which the drug is prescribed is still present.  A number of other drugs not associated with opioids or addiction can also result in physical dependence (i.e., antidepressants, beta blockers, corticosteroids, etc.) and can trigger unpleasant withdrawal symptoms when stopped abruptly.

Tolerance is a condition that occurs when the body adapts or gets used to a particular medication, lessening its effectiveness. When that happens, it is necessary to either increase the dosage, switch to another type of medication in order to maintain pain relief, or employ an adjunctive therapy.

Pseudoaddiction is a term used to describe patient behaviors that may occur when their pain is not being treated adequately. Patients who are desperate for pain relief may watch the clock until time for their next medication dose and do other things that would normally be considered “drug seeking” behaviors, such as taking medications not prescribed to them, taking illegal drugs, or using deception to obtain medications. The difference between pseudoaddiction and true addiction is that the behaviors stop when the patient’s pain is effectively treated.  

Stigma refers to the negative attitudes expressed by members of the community, including healthcare professionals, that result in discrimination and devaluation of the individual solely because of their characteristics. Appropriate use of language in is important. Inappropriate use of language leads our thinking and expectations and can negatively impact the way society perceives both addiction and chronic pain.  

Negative labels impose the mark of deviance that deprives people of individual qualities and identity.  Stigmatizing labels cause us to explain away illness symptoms through beliefs that have nothing to do with the facts of the person or the causes for their chronic illness or addiction.  

Assigning ‘marks’ and ‘red flags,’ we employ labels to deny the real conditions of daily life for persons living with chronic pain. Professionals are trained to believe that ‘catastrophizing’ is an aberrant behavior associated with drug seeking, rather than understanding that it is a plea to be taken seriously as a person who is under treated for pain. Pain attributed to ‘somatoform disorder’ becomes the ‘mark’ of psychological illness rather than an indication that the physician has failed to pursue a diagnosis because they have misinterpreted your symptoms by exercising their own faulty beliefs. A person who drives more than 50 miles to fill a prescription may not have access to a provider who will take their insurance, may lack access to a pharmacy that will stock their medications or absent insurance, accept cash.  

Stigma is harmful, distressing, and marginalizing to the individuals, groups, and populations who bear the burden of negative labels. It also results in misdiagnosis, wrong diagnosis and under treatment. It may lead the provider to select the wrong treatment protocols resulting in treatment failure or patient harm. It may result in the consumer losing any confidence in the possibility of establishing a healthy working relationship with providers.

At all levels of this discussion, we must employ safeguards to protect patients from the inappropriate use of stigmatizing language – through our guidelines, our interpersonal interactions, and our public language.  Now more than ever, we must resist the use of the ‘mark’ to dictate how we deliver competent healthcare.

Editor’s Note: Part Two will feature Dr. David Nagel.

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Authored by: Terri A Lewis, PhD.

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This article truly explains it like it is. We are stuck with the stigma until we do something about it. I have a link below, we are seriously trying to do something about the stigma. Please sign the petition.https://www.change.org/p/david-tauben-md-matthew-j-bair-md-jeanmarie-perrone-md-stop-government-control-of-your-health?recruiter=425114238&utm_source=share_petition&utm_medium=copylink

Very good article. Thank you so very much for writing it! I’m going to print a copy and give to my Dr. Not that it will make any difference, but it might help me feel a little less powerless. You will be my voice. Keep up the good work. Please.

This is absolutely untrue. How is it that those who don’t suffer from chronic pain think they know what’s best for you. The truth is the alternative med (non opiate) has worse side affects for some patients. They should think before trying to claim their belief of medical care for chronic pain suffers. Stop my tramadol and you create my choice to commit suicide. Our govt Marijuana is illegal, but I see what you’re doing there. Try to legalise Marijuana because now pharmaceutical companies can manufacture cannabis. Don’t use us chronic pain patients as your experimental project. People die because you fukrs cause the reaction.

I would like to say that I was taken off a pain patch cold turkey because the doctor that originally prescribed it, retired and my PCP refused to prescribe it. Those first few days were HELL! Thankfully, I live in a state that allows medical marijuana. The bad side to this is that I live on $842 a month. After paying my bills I have just a few dollars left to pay for the pot. This means that about 95% of the month I am in severe and constant pain. I wish that there was some doctor in my state that would prescribe opioids for my chronic pain conditions 🙁

People kill them selfs for the doctors fault.we are in real pain and is unvereble.one of this days someone will make a doc,feel some pain.then ? Who will the docs will listen too,the world will get tired.

thank you all for saying what i want to say ..? i can not too much pain

Thank you Terry Lewis for speaking the truth about this issue. Your articles are always very insightful. The bias causes undo stress and makes it so much harder to heal and have a better quality of life for the patients and their families. It’s like living with the sword of Damocles always over your head. Just so wrong! All this language in the new policies is very regressive and biased toward pain patients and the doctors that treat them.
This false narrative of “drug abuse” with patients who utilize high dose opioids (over 120 MEQ) being labeled as “overutilizers”, and their doctors “overprescribers” and calling all prescribed opioid medications “drugs of abuse” is very stigmatizing, and makes both the physician and patient seem like criminals and drug addicts!

Pam your doctor is wrong.those guideline he speaks of have not beed published yet. They are also being revised because of the process the cdc and prop.used. they stated last week that doctors should notake any changes in their dosages with chronic pain patients until everything is finalized
This wont be until after january of at all. If you live in washington or connecticut your screwed and should move
Manywjere else, get a print out of all your precrriptions, mri and any other documentation and find a skilled painanagement doctor. Many in california still.care about their patients.

With the weather turning damp in Montana, my back pain has been to the point of crying myself to sleep. Fused L2-S1 and both SI joints. I’ve had over 29 injections since 2003. I normally have fairly low blood pressure but when my pain is really bad it gets into the high range. You’d think that would be enough. The first few times my blood pressure was high I was confused and was even told “oh, it’s probably because of the pain”!!! Shouldn’t that be some type of measurement!

I went to a walk in clinic today because I was just in so much pain I couldn’t stand it. I will say the doc was very empathic, listened to me a long time and I believe he couldn’t understand why I wasn’t given any pain treatment. He gave me a shot of toradal, which didn’t work as well as it did last time, and said it was “company policy” that they can’t give scripts for pain medication. He had no clue about Ehlers Danlos, hypermobility (I showed him a cut I’ve had since mid august tripping over a sunflower stump at the community garden) – it still isn’t healed! And yet the only doc who first even mentioned that disorder to me was the one charged for over prescribing in Missoula. I have every major and minor symptom. I also shared with him the CYP info and Dr. Forest Tennant’s name. To his credit he was already on the computer looking up the info I’d shared. He also said he’d try to think of someone who could offer help and agreed I needed something to get my pain under control. Just being believed makes such a difference.

FUIRIOUS! That is what I am! I am a LEGIT chronic intractable pain sufferer. I have had two failed spinal fusions that left me with excruciating nerve pain down my legs into my feet. I also have severe stenosis, deg. disc disease, three hern. discs, fibromyalgia, arthritis in my hips and spine, migraines, and because of the hell I have been FORCED TO LIVE BY OUR GOVERNMENT, THE DEA, CDC AND ANYONE ELSE WHO IS DOING THIS MESS, I now suffer from SEVERE ANXIETY ATTACKS! What the hell does our government think they are doing?!?! I tried all other options that MY BODY could take. Years of physical therapy, massage, epidural injections, steriod injections ( of which my dr makes sure he jabs me with those needles MONTHLY). God only knows what damage all that shit he is injecting me with is doing to my insides! I have tried all kinds of medications that just DID NOT WORK! OPIOD THERAPY WAS MY LAST RESORT! I was finally given a QUALITY OF LIFE! That was many years ago. I was on THE SAME DOSE FOR YEARS WITH SUCCESS, WHILE NEVER PAIN FREE, MY PAIN WAS AT A MANAGED LEVEL WHERE I GOT THRU THE DAY AND COULD ACTUALLY TAKE A SHOWER DAILY, OR COOK A MEAL, CLEAN MY HOUSE. I was on ONE soma at night, oxycodone 30 mgs every four hours and oxycontin every 12 hours. IT WORKED! Then about a year ago the soma was taken from me, i was told it can no longer be written with the other two meds. What a effin joke. So there went the only muscle relaxer that worked for me, there went my sleep and the spasms and tension in my body dramatically increased! Then the oxycodone got lowered to four times a day, not every four hours. Well I had to work myself into a schedule to where I took it every four hours during the day up to four times a day so I could at least get thru the day. i am a single mom on perm disability. My kids need their mom! Even though I would only get two hours sleep at night, i would force myself to wait til morning before taking a dam pill. The excruciating pain, I cried all night in agony, but I needed to get thru the day and like clockwork every four hours or so my lower back starts locking up, as if my spine is in a mechanics vice grip machine and the crank is getting tighter and tighter on my lower spine where the fusions are, the piercing, burning, electrifying, intense pain that shoots down my legs into my feet makes me want to take a crow bar and stick it behind my spine and yank it out! My right foot is constantly on pins and needles. If I drive more than 15/20 miles again my lower spine locks up and the pain goes down the legs into the feet,… Read more »

I am FURIOUS! MY BODY HAS HAD ENOUGH!

Stigmatization occurs when someone or some group applies erroneous attributes to another group of people and does so out of ignorance. When the erroneous attribution occurs with knowledge of the error, or when the person SHOULD have known the error, the process is no longer stigmatization but becomes demonization. To demonize another person is a crime….at least it is a crime against humanity!

Continued….

Medications. Those are people looking for a high. I you are going.to mix booze with apin medication you can stand a chance of killing yourself.or others. Here inlies the problem. Doctors have many of us sign a contract. I ahve adhered to mime for 7 years. I do not drink, yet that was not a pat of the contract. Maybe that should be the dealbreaker for a pain patient. If he or she needs to drink along with the pain medicarion they need to make a choice for the doctors safety. What i find amusing is the uae of marijuana to reduce pain. That never worked for me it just made me high and hungry. Doctors do tell patients they cant smoke pot and take pain meds or they can be dropped. They never bring up BOOZE!
The people trying to make these new rules have most likely never smoked pot or taken pain medication on a daily basis due to incurable chronic pain. Here is a disclosure of mine.. i do drive, i have been on pain medication for seven years. I just wrote this article on my phone, i didnt do sp. Check i apologize for any errors i have large thumbs and for the past 6 of 7 years i take 3 80 mg oxycontin and 6, 15 mg morphene pills per day.my wonderful doctor tool over a year to get the dose right for ME in order to work, be a productive husband and active father as best as i could be. I am able on a good day to go to disneyland for a few hours help around the house somewhat and be a part of my families life. I used to be in AGONY 24/7. Icouldnt get out of bed without my wife helping me. She had to help me dress, she had to help me eat and. She had to help me do just about anything. Dont get me wrong, i still have pain 7 days a week but instead of 10 out of 10, im luke a 4 to 6 out of 10. This is only because of the medicatiion i take. Please dont make me go backwards.
I just wrote this long article, If tgis medication was so bad or too strong or too much, i couldnt have done this. With that said, each patient is different and each one of us deserve to have a life with a low amount of pain.
Thank you

Great article. It is unfortumate real pain patients like myself must endure the the negative judgements by others. What is really wrong is that we get the most negative judgements by our own doctors, pharmacists, insurance companies and politicians. We are the scapegoats for the beaurocracy. I Have 3 conditions that cause incredible pain, ny doctors rried many avenues before opioid medication. Nothing worked. Actualy, physical therapy made a bad problem worse. To label this an epidemic is language used to induce fear in those that dont understand our situation and also gives them the opportunity to believe they are helping us, when they are doing more damage then good. DESEASES LIKE POLIO, BUBANIC PLAGUE, EBOLA AND THE SUCH ARE EPIDEMICS.
THE SAD TRUTH IS THE DEA, CDC hAVE PUT FEAR OF JAIL, FINES AND LOSS OF LISCENSE TO OUR DOCTORS.
WHEN 6P MILLION PEOPLE TAKE TAKE THE MEDICATION PROPERLY SUCH AS MYSELF WE ARE ACTUALLY HEALhIER, ABLE TO BE SOMEWHAT PRODUCTIVE and in my case just get out of bed and dressed everyday without assistance.
Too many people are afraid to admit its the insurance companies and their desire to save money. These prescriptions run into the billions of dollars and when we chronic pain patients are denied as much as 80% of the dosages that enable us, they are happy as can be. They stand to save hundreds of millions of dollars each year. This is going to add to the bottom line. It os not secret insurance companies are adversaries of the patients and Doctors. Our legal system has done a fine job.pf clearimg out the evil doctors for the most part however as long as we are a capitalistic nation greed will raise its ugly head. We are now going too far. Each patient MUST be treated as an indicidual, not as a group. Each patient MUST be able to have access to the medication that tales their pain away and offers them an opportunity of some sort of life. Each patient MUST be able to fill their prescriptions without being judged by a pharmacist or a Doctor with another agenda other then the treatment of their patients and finally EACH PATIENT MUST BE ABLE TO LITIGATE WHEN THEY ARE NOT BEING TREATED AND OUR RIGHTS TO MEDICAL CARE ARE TAKEN AWAY.This whole debate has gone too far already.TOO MANY PEOPLE ARE ALREADYNGIVING UP. I have read heroin usage is up among middle class and the elderly because their usual pain medication has already.been denied. I jave read that the suicide rate has also risen for the same reason. What keeps me up at night is the Cdc and DEA and PROP ARE USING THOSE STATISTICS AND CALLING THEM OVERDOSES JUST TO MAKE THEIR AGENDA HAVE MERRIT. THE TRUTH IS, THERE HAS NOT BEEN 1 DEATH OR OVERSOSE TO A CHRONIC PAIN PATIENT THAT TAKES THEIR MEDICATION AS DIRECTED.
PEOPLE ARE DYING FROM ALOHOL OR MIXING PAIN MEDICATION WITH ALCOHOL OR OTHER

Well written and thoughtful and accurate. While it is true that PAIN is an experience that we cannot measure (just like the taste of chocolate) there are some very real and objectively measurable correlates and/or consequences of pain. It is misleading to characterize pain as just subjective. For example, falls are very common among people with chronic pain and the injuries from these falls cause objectively measurable injuries and even death. Only the STIGMA wrongully applied to chronic pain sufferers prevents doctors from listening to the chronic pain patient. Furthermore, peripheral reflexes and particularly the knee jerk are often hyperactive in chronic pain patients, but not in noormal population. There is frequently an abnormal crossed adductor reflex in the chronic pain patient that is not seen in the normal patient. There are also publications that list a variety of abnormal long latencey electrodiagnostic responses that can be measured and that may well correlate with the abnormal electronic nervous system signals that lead to the perception of pain. I have published a short paper about this in the September 2015 issue of Practical Pain Management, available online.

On the other end of the pain treatment paradigm, the stigmatized chronic pain patients are too often told to get injections for which there is NO evidence of long term efficacy. Some people report that they are coerced into getting invasive shots as a prerequisite for any medication prescription. The shots are pushed even though there is plenty of evidence from FDA recalls that there is a very real chance that the medications from compounding pharmacies may be contaminated. In the most famous case, the owners of one compounding pharmacy, New England Compounding Pharmacy, have been charged with 78 counts of murder for selling contaminated medication that led to fatal fungal infections. Even now, 3 years later, people who were injected are occasionally developing serious and life threatening fungal infections according to the CDC.

Ironically, the US courts have held that this type of stigmatization cannot be used to force convicted addicts and drug dealers to undergo invasive treatment or diagnosis against their will. But the pain patient, wrapped in the shroud of stigma, can be forced without any court action to undergo procedures that do have serious and even fatal consequences. And for the people who got shots with toxic NECC compounds, the death rate is far, far higher than the death rate for drug overdose in the general population.

Yes stigma has its price and it is far worse than just some name calling.

Thank You Dr Lewis.
Best summary of the linguistic challenge of pain I have seen yet.
“Pain is A Fucking Terrorist”
Also says it concisely, and patients love hearing it that way, your powerful and well considered language about the language of pain deserves to be repeated like a bell ringing through the halls of Medicine.
Let’s keep ringing that bell. Hammer out justice.
Pound out freedom.
Love between our brothers and our sisters.
All over this land.

I hope no one minds me voicing my opinions yet again. I hope this is helpful. The stigma as it is applied right now only exists because it is very hard to prove the existence of pain. The stigma should be better directed, to be a badge of dishonor for professionals with neanderthal attitudes toward pain. And the colleges of physicians should shake off the dust and get in gear. Why is it that veterinarians get more training in pain management that family physicians? Fix that and delineate a clear protocol so if a family physician is over his/her training and experience, there’s a clear recommendation that the patient be referred to either a pain doctor, a neurologist or other specialist as needed. When any doctor refuses to participate, there’s penalties for putting their stubborn self-importance ahead of the patient. My family doctor retired recently, leaving fifteen years of notes on my care. That doctor took a big interest in chronic pain and also lectured at the university on avoiding abuse of prescription meds. It’s clear his replacement (not newly minted doctor) has not read any of my file. If fact he did not bother to read an important report sent to him recently by my pain doctor. I asked him straight up “Have you read it?” and when he hummed and hawed I said “Please, it is important. Take a moment and read it”. I’m luckier than most Fibro sufferers, because I have easily verified injuries, so having access to pain killers has not been a huge problem. But over the years I developed chronic fatigue and moderate to severe random pain for which narcotics are useless. My doctors were always quick to say all of these new symptoms were referred pain or peripheral myalgia, “nothing we can do”. Neither the pain doctor, nor the family doctor wanted to discuss Fibro at all. So when I first met my “new” family docotor, I asked for a referral to a neurologist to get a Fibro assessment. Right then he did his own assessment and put me on Cymbalta. And it helped right away! Was that so hard? Why couldn’t one of the other doctors do that somewhere in the previous five years? But then, as if to snatch defeat from the jaws of victory, once the Cymbalta worked for the peripheral pain, the family doctor said he wanted me off narcotics, saying that Cymbalta was all I needed. It was as if he thought my injuries had be cured! Thank goodness my pain doctor set him straight. Doctors cause a ton of stress by not listening, not communicating clearly, showing no empathy, or just taking shotgun approaches instead of referring to specialists. Even the doctor’s front office staff and pharmacy techs at times exhibit a god complex, seemingly capitalizing on patients needs and anxiety. This sort of stress is a truly aggravating factor for pain. Just what we need, go to the doctor for a prescription renewal and by the… Read more »