Opioid Patients Often Feel Stigmatized, Review Finds | HCPLive – by Samara Rosenfeld – Feb 2020
Patients who took opioids for chronic non-malignant pain often felt stigmatized and did not want to take the medication, according to a recent review.
Since we don’t even want to take opioids, this is clearly NOT addiction!
The findings of the review highlighted that individuals who took opioids weighed the pros and cons of the medication but felt they had no choice but to take them because of their pain.
This is exactly how I feel: what choice do I really have?
When nothing else I’ve tried (spending thousands of dollars and years of medical appointments) has been effective, and my pain has become severe and constant enough that I’d be chained to the couch or bed, I don’t feel I have a real choice.
What’s more, patients felt they were not always on the same page as their healthcare provider.
This is because health care providers have been incentivized (and threatened) to lower their opioid prescribing beyond all reason or medical judgment.
ivien Nichols, a research associate from the Warwick Clinical Trial Unit at Warwick Medical School in the UK, and colleagues screened 2994 unique citations and checked full texts to better understand the experience of taking opioids for chronic non-malignant pain or coming off them
The team identified 5 themes:
- reluctant users with little choice;
- understanding opioids (the good and the bad);
- a therapeutic alliance (patient and provider not always on the same page);
- stigma (feeling scared and secretive but needing support); and
- the challenge of tapering off or withdrawal.
An overarching theme of constantly balancing also emerged.
Reluctancy but Little Choice
The investigators identified this theme, which described a resistance or hesitancy to take opioids. Patients were mainly concerned about side effects or addiction but felt there were no alternative options for them.
Other patients mentioned underusing or reducing their medications when possible because they did not want to be on medication long term.
Some recognized instances of dramatic improvement in people’s lives, which weighted their choice to stay on opioids.
And here, there are some great quotes from the study itself:
I mean it is just like a miracle as far as I am concerned. It is like knowing it [the pain] is there but you have the instruments to prevent it from getting out and [be]coming a roaring demon. (Vallerand and Nowak, p170)
But opiates, that’s my way of life. There would be no life if I didn’t have this. And I thank God for them because without them I’d be…well I wouldn’t be. I just couldn’t go on. I would have committed suicide a long time ago. And I say that truthfully cause you could not live like that, with that constant, constant pain. But, with the opiates it’s made it possible to be able to have a part of a life, you know. (Brooks et al, p20)
Understanding the Benefits and Pitfalls of Opioids
The theme described patients’ knowledge or understanding about opioids.
Patients acquired the information they needed slowly over time from pharmacists, inserts in their medication, and the internet.
In a previous study, a patient reported that because nobody told them about possibilities of overdosing, they did not take their opioid medication as prescribed. Rather, whenever they felt pain, they took 5 or 6 pills and then would run out.
Yikes! I think it’s negligent of a doctor not to explain how to take opioids and the dangers of taking far too many like this.
For some of us, opioids can take up to 2 hours to finally kick in, so if I kept taking another pill every 20-30 minutes because I still hurt, I’d be taking 4-6 tablets instead of one.
If a patient felt their provider lacked an understanding of the place for opioids in treatment or were cautious about using them, they felt additional stress and like they needed to defend their usage.
Not Being on the Same Page as Your Provider
“My family doctor does not want me to be dependent on heavy pain meds, so I am intensely miserable 99% of the time,” a patient said.
This is so sad. When a person is so miserable from chronic pain, withholding an effective pain reliever can be equated to torture.
Patients reported that they were not listened to and were frustrated by a lack of empathy from their physician regarding their experience with pain.
Providers who were reluctant to prescribe or used opioid contracts or a restriction of medication were considered punitive, and made patients feel like they were doing something wrong or being treated like a drug addict.
Some patients complained that it was difficult to build a therapeutic alliance due to frequent provider turnover, which affected a patient’s ability to receive individualized care. Patients often needed to restart conversations about pain and treatment options.
Feeling Stigmatized but Needing Support
Patients described feelings of stigma and fear in relation to their opioid use. The stigma came from negative attitudes and reactions from family, medical professionals, and work colleagues.
My mother used to needle me by insinuating I was just addicted to my pain pills and that’s why I had to take them so much. But since that she also began suffering from untreatable pain that is ONLY relieved by opioids, she no longer mentions addiction or anything negative about opioids.
It’s a real problem that, until they have it themselves, people (even mothers!) just cannot understand the burden of chronic pain and the miraculous relief of opioids.
“As soon as you mention to someone that you are on pain medication it’s, “Oh my god, you’ve got to get off it,” a patient said. “It is viewed as weak. Somehow I am weak for being on this medication.”
Challenges of Stopping Opioid Use
Patients reported feelings of anxiety that could be alleviated by support from their healthcare provider or another person. Successfully tapering was often a collaborative agreement between the provider and patient.
Of course, the definition of “successful taper” is ONLY that milligrams of opioids are reduced and patient outcomes are not tracked anywhere in these policies.
Constantly Balancing
Overall, the investigators tied the 5 themes into 1 overarching theme:
constantly balancing.
Oh, how true this is!
I’m always weighing if unusually severe pain is worth one of my “breakthrough” medications or if I can just tolerate it and save those pills for another time (which could always be worse).
And then, if I do take more medication, I again realize how extremely effective opioids are for me and worry that I’ve just increased my tolerance.
Since my EDS symptoms cannot be cured or solved or even lessened, I know I’ll be depending on opioid medications for the rest of my life, so I’m doing my best to keep my tolerance as low as feasible.
I’m sick of having to consider so many different and opposing factors when deciding to take opioid pills, but I can see that I only have this conflict *because* they are so effective and I’ll need them to be effective “forever”.
Ultimately, clinicians must walk a fine line to balance the pros and cons of prescribing opioids while maintaining patient trust.
The study, “Experiences of people taking opioid medication for chronic non-malignant pain: a qualitative evidence synthesis using meta-ethnography,” was published online in the journal BMJ Open.
The study (link above) is worth taking a look at because of all the illuminating and sometimes surprising quotes from “real” pain patients.
EDS and Chronic Pain News & Info 
It is no surprise that patients feel stigmatized, they have been under attack for years. Initially when Perdue’s activities came to light, they started a PR campaign to blame patients and people with addiction, to avoid scrutiny. This tactic worked for over a decade. The agencies that were supposed to protect us, where not allowed to track or prosecute the big players, and profiteers. Sick people were a really good scapegoat. There was also the marketing angle, where conflating pain patients with the addicted was profitable, the lab tests alone, worth billions. The made laws and regulations that forced pain patients with no history of diversion, to see their physicians monthly, even though there was no need.
Marketers of psychological practices, self help books, medial devices, and spine surgery saw profitability in spreading fear and describing all pain patients as addicts or potential addicts. The medical marijuana industry even got in on the action, while describing everyone whoever took an opiate as an addict. This was all about increasing market share. It has been over 2 decades since the Oxycontin marketing scheme, and they have done nothing to regulate pharma marketing, or deceptive health marketing.
It was a great marketing scheme to portray all pain patients as craven addicts, dehumanize them, and mislead the public about the prevalence of pain. There are still media amplified biased studies, about pain and mental illness, where the pain is secondary, and the behaviors caused by the pain, often untreated are attributed to a mental illness. The country is in the midst of a problem where millions of disaffected and disenfranchised people are checking out with drugs and alcohol. In order to perpetrate the current denial and protect the big corporations, they need a scapegoat.
Above all all of this has been profitable, and we are no closer to a solution than 20 years ago. Facts, Science and human decency have no place in the discussion. Oxycontin and all of the “alternatives” they marketed to replace it were profitable. They took an old drug in use for millennial and repackaged it, branded it and marketed it. They looked the other way on the diversion, to the black market, to protect the pharma industry. Stigmatizing pain patients has really paid off, now physicians can attribute mental health issues, to anyone reporting pain. They can deny care to anyone, for their own good.
I had a friend in her 70s, whose physician was so concerned about her becoming addicted, that when she reported “back-pain” they physician told her to see a chiropractor, even though she was on medications that damage the kidneys. She saw the chiropractor for 2 years as he drained her life savings. Each time she saw the physician she reported increased back pain,and the physician ignored it. The chiropractor kept selling her more supplements, herbs and concoctions. The pain they later found out was Kidney Cancer, a cancer she was at high risk for. They let the cancer and pain grow for two years before she was diagnosed.
The fear of opioid addiction was more important than a timely diagnosis. In all likelihood this woman was not interested in opiates or taking them, but all people reporting back pain are drug seekers. Even after this the physician had the nerve to write an advertorial for our local newspaper recommending a specific chiropractor for prevent opioid addiction, and back pain.
Of course there is no evidence anywhere that chiropractors prevent opioid addiction. There is no shortage of them here, even though we have high rates of addiction to illicit drugs. There are lots of alternative practitioners here, and not any proof they have prevented one case of addiction to street drugs.
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Re: “It has been over 2 decades since the Oxycontin marketing scheme, and they have done nothing to regulate pharma marketing, or deceptive health marketing.”
This is a good point: they claim that opioid marketing is what led to overprescribing but they haven’t done anything to change the situation for the next time.
And regarding the low back pain they later found out was Kidney Cancer – I’m horrified. As patients, we must not assume all doctors know what they’re doing. If one isn’t helping, you have to push hard to see a different one.
If I’d stuck with the doctors that thought they had the “cure” for my pain, I’d never have found the underlying problem of a genetic disorder. I’d probably still be spending thousands on various useless “treatments”, some of which were doing more harm than good. Bad enough that I did this for several years (and severely depleted my savings in the process), but I saved myself by seeking out better doctors who were willing to believe and really think about how my crazy pain and other symptoms might be related.
There’s no cure for me, but at least I can understand exactly what is causing my pain and not left wondering and worrying.
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