There exists a large, mostly-underground, growing community consisting of those iatrogenically harmed by benzodiazepines. Guilty only of following doctors orders, these patients are marginalized and misunderstood. This has been enabled, at least in part, by poor terminology.
Recently on Twitter, Michael P. Hengartner and Marnie Wedlake both posted critical questions in response to a benzodiazepine news story:
In response to Michael’s, my immediate thought was that not knowing is a direct result of the conflation of addiction with prescribed physical dependence. Countless testimonies can be located online from patients whose medical providers reassured them not to worry about long-term benzodiazepine use because they lacked “an addictive personality.”
The answer to Marnie Wedlake’s is simple — they cannot. While the language used to educate both patients and prescribers about this drug class is only one component convoluting this problem, it is a big enough that it is undoubtedly hindering progress.
Physical dependence and addiction are not synonymous (see: patient education materials that accompany some benzodiazepine prescriptions). Yes, physical dependence can manifest from both abuse and compliant use. But physical dependence can stand alone. Signs of its development — tolerance, interdose withdrawal, and/or withdrawal symptoms with dose reduction — are not an accurate indicator that addiction is co-occurring. So then why are terms like “addictive,” “addicted,” and “hooked” utilized by many experts and media outlets to describe what is actually prescribed physical dependence? I believe the answer is two-fold: (1) confusion (lingering from a history of bastardized language) or a lack of education; and (2) the media’s desire for a sensational headline. The latter alienates the as-prescribed population and comes at the expense of accurate reporting.
When examined objectively, it is obvious that this terminology approach is illogical. It also has considerable cost in the following ways:
1. By providing a false sense of security to the prescribed physically-dependent population. Drug abusers know they are at risk of harm. Patients compliantly taking benzodiazepines, long-term (>2-4 weeks), often do not. Stories encountered about “benzodiazepine addiction” are dismissed as irrelevant and fall on deaf ears. Instead of an informed warning, patients and their prescribers are left incorrectly reassured that any problems with benzodiazepines lie solely with the user’s behavior as opposed to being inherent to the drug class itself.
2. It results in misdiagnosis and dangerous mistreatment. Physically dependent patients who do accurately identify symptoms as originating from their benzodiazepine may seek out or be referred to addiction-based “treatments,” like rehab or “detox,” if they are left under the impression that they are “addicted.” At such facilities, the “law of the instrument” often manifests when all patients are universally “treated” under the “addiction model,” consisting of abrupt discontinuation of any drug deemed “addictive,” irrespective of abuse history. This practice defies all respected benzodiazepine withdrawal guidelines (calling for slow, patient-guided tapers). The result is often disastrous, increasing the risk of severe symptoms (seizures, psychosis, suicidality, akathisia, etc.) and protracted neurological insult.
Similarly, in the outpatient setting, physically dependent patients mistaken for “addicts” are sometimes “fired” or have their prescription “cut off” by misinformed prescribers. For best outcomes, patients require understanding, patience, and withdrawal guidance that facilitates slow tapering, usually over many months and years.
3. It causes displaced blame. Compliant patients are too often on the receiving end of misdirected blame when they are mistakenly believed to be “addicted” to benzodiazepines. This literally adds insult to injury. Worse, it enables the problem to persist because fault is directed away from actual causes like prescribing practices which ignore well-documented long-term risks and harms, inadequate pharmacovigilance, lack of truly informed consent, etc. Since fault is assigned solely to patients, there is no impetus for change.
To tackle this terminology hurdle effectively, clinicians, educators, the media, etc. need to present benzodiazepine issues in a way that makes clear there are four distinct problems: (A) adverse effects; (B) iatrogenic physical dependence (including tolerance and interdose withdrawal) and subsequent withdrawal reactions; (C) post-withdrawal (protracted) neurological insult; and (D) addiction/misuse.
Collectively, these encompass all potential complications but each has individual problems deserving of their own platforms. Prescribed harm advocates are attempting to spotlight the first three (A-C), those being the most common yet most unrecognized and overlooked. Doing so proves difficult, however, because there is a lack of meaningful discussion as a consequence of the language of condition D eclipsing everything. The dominant narrative is that everything falls under the addiction umbrella, regardless of whether that narrative applies. Case in point: cardiologist Dr. Christy Huff recently told her story of prescribed physical dependence to Xanax on “NBC Nightly News with Lester Holt” (the news story referenced in the above tweets). Her story is a cut-and-dry case of elements A (adverse effects appearing after only a few weeks) and B (physical dependence that developed, as could be pharmacologically expected, shortly after being prescribed Xanax for insomnia), with no trace of D. Much to the chagrin of everyone championing for accurate benzodiazepine safety information, the newscast was riddled with addiction terminology. The narrator misrepresented Dr. Huff’s story, proclaiming she was “hooked” on the longer-acting Valium she’s using to taper. Meanwhile, the following caption trailed beneath her on-screen image: “Doctors warn of addiction risk from anti-anxiety drugs.” More inaccurate information. More false security. More misplaced blame.
Unfortunately, public commentary beneath the news segment on social mediaconsisted largely of finger-pointing at the “addicts” for “ruining it for everyone else who takes them appropriately!” Another missed opportunity to warn the public with the message that Dr. Huff set out to convey — that anyone who takes benzodiazepines, even exactly as prescribed, is at risk for potentially severe adverse outcomes (physical dependence, painful and/or lengthy withdrawal, protracted neurological insult, etc.)
A popular children’s rhyme concludes, “… words will never hurt me.” But this isn’t just a case of hurt feelings over a botched news story or labeling people addicts when they aren’t. It’s much more serious than that. In this case, misapplied words do grave harm. Many people’s lives and health hang in the balance. By taking great care with the terms we use to discuss benzodiazepines, we can alleviate unnecessary suffering, provide the information needed for consent to be truly informed, and save as many patient lives as possible.
Originally published on KevinMD.com on September 20, 2018.
Here is not a comment but a question. I regularly come across inappropriate addiction language in Pharmaceutical sites. Some of this is truly offensive and, of course, false. Does BIC have a place for reporting these harmful publications?
I do not respond to the addiction ignorance episodes. As one person, I would be discounted.
Related to this: Some well-meaning organizations in the UK still call the benzo injury an addiction. When corrected, they say that this is an unintended addiction. This must be tactfully corrected.
I know of a few people who had chances to expose this ugly situation via TV interviews. Every one refused because testimony was to be followed by a rebuttal. This plan poses as balanced reporting. Balanced it is as in giving voice to the perpetrator.
Those who relinquish privacy and tell their stories in order to prevent harm to others should be honored.
I will gladly relinquish my privacy…. show my face….open my big mouth to ANYONE AND EVERYONE WHO WILL LISTEN. Not just to my horrid story of being on Klonopin for TWENTY FIVE YEARS but to everyone’s story. Thank you for all you guys are doing!
I want everyone at BIC to know that I am extremely grateful for everything you are doing. Someday, when I am well, I’d love to be of some help in this same capacity.
Ditto. Same here!
And your posts have been encouraging to me. I especially like your last paragraph above, about being able to point others to BIC and then stand down. I, too, am so very grateful for BIC.
This really touches my heart to see how many people are going through what I have been through most of my life. I found out late in my life that it was the benzos killing me 32 years I was percribed Xanax and struggled through life lost jobs homes everything and I’m still fighting everyday. I hope that more doctors and government inform themselves so they can stop this suffering. thank god for benzoinfo.com it’s nice to know that we are not alone in the fight to servive. god bless
I hear you and feel for you. I’m in a very similar situation. I was prescribed Klonopin TWENTY FIVE YEARS AGO. I’m still unable to get off of them. I understand you…?
Are you still on clonazepam ? I am 89 years old and my doctor put me on clonazepam for a bad panic attack around 1985 or 6. .05 since cut in half to take morning and evening 9 am &9pm as you see that is about 28 years . I never took more but did try to cut down . I have daily withdrawal but handle . at my age I am in good health. Any suggestions thank you Note My frist,second ,third Doc have all passed on but every dr since kept me on the pill. not one said lets stop.
Thank you for this honest and thoughtful article. I can’t tell you how many people I know taking some form of benzo as prescribed who are completely unaware of the true dangers. When doctors prescribe people medication the patient seems to think it’s safe no matter what. I saw my family member go through all of the horrific changes that can occur from benzo use. He took it as prescribed. It is hard to explain to others who haven’t seen it firsthand. From the beginning of his prescription through the years of prescribed use leading to multiple adverse effects both physical and mental, to the unfortunate detox center withdrawal nightmare to his multiple hospitalizations afterward and to his finale as death by suicide, no one truly understands who hasn’t seen it firsthand.
Nicole, Great article and so glad you brought up the Lester Hold NBC report, if you can call it that…if you sneezed you would have missed it. I am a big fan of Lester Holt and watch him often, but your observations were spot on. Keep up the good fight. Hawkins