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.
Nicole is a Physician Assistant residing in Virginia. She obtained a BS at James Madison University in 2000 and then went on to complete the Master of Physician Assistant program at Eastern Virginia Medical School in 2004. She practiced in an Urgent Care and Occupational Medicine setting until severe illness from benzodiazepine withdrawal syndrome left her unable to work.
In 2005, she was prescribed Xanax for “work-related stress”. Over the course of five years, she developed many classic symptoms of benzodiazepine tolerance withdrawal, which multiple psychiatrists misdiagnosed as mental illness. This resulted in prescribed polypharmacy to “treat” the troubling symptoms of tolerance, including two benzodiazepines prescribed simultaneously, a Z-drug, an antidepressant, and an antipsychotic. In late 2010, after discovering a magazine article authored by a journalist experiencing similar symptoms from his prescribed benzodiazepine, Nicole was prompted to research further and made the connection between her own troubling symptoms and the medication. This was followed by her immediate decision to withdraw. Unfortunately, lacking the proper guidance or information at the time regarding the absolute need for a slow taper, she was negligently cold-turkeyed in a detox center. This ultimately resulted in a severe and protracted withdrawal syndrome that persists to date.
When symptoms allow, Nicole writes about benzodiazepines and their potential to cause severe and/or protracted withdrawal syndromes and volunteers her time helping with ongoing benzodiazepine awareness initiatives including Benzodiazepine Information Coalition and the Benzodiazepine Action Work Group of the Colorado Consortium. Nicole also co-founded The Withdrawal Project and she does marketing, distribution and outreach for Medicating Normal-The Film. She hopes to continue to use her lived experience to advocate for more education and awareness around benzodiazepine risks and harms as well as for changes in prescribing and withdrawal practices. Other interests include the primal lifestyle.