Illustration: Rob Dobi for The Guardian
Anyone who was rendered iatrogenically dependent on benzodiazepines (BZs) and unlucky enough to then develop a ‘withdrawal’ or ‘protracted (that is a more severe and can persist for years post-cessation) withdrawal’ syndrome knows firsthand what it’s like to try to navigate the medical system (and society in general, sometimes including friends and family members) with this condition. What it’s like to plead your case that the drugs, although you may have discontinued them years ago, are responsible for your state of disrepair. And what it’s like to try to do it while panicked, cognitively impaired, unable to advocate for self, anxious, unable to make eye contact, sweaty, shaking, dizzy, exhausted, terrified, agoraphobic, depersonalized, derealized, etc.
Most everyone who experienced the above has attempted multiple times to find a “benzo-wise” medical provider; one who, at the very least, is willing to listen, be open-minded, and to let them, the patient, have some much-needed (especially when tapering) control. Why multiple times? Most typically, the majority of these interactions end in frustration and defeat. The BZ sufferer finds themselves each time met with blank stares, a raised eyebrow of suspicion, and/or the double take of disbelief.
These encounters usually start out something like this:
BZ patient: “I stopped taking a taken-as-prescribed benzodiazepine ‘x’ amount of years ago and have been very sick due to protracted withdrawal ever since” or “I am stuck on this medication and need a repeat prescription for the benzodiazepine that will allow for a very slow taper because every time I attempt to reduce any faster I experience intolerable withdrawal”.
And the interactions usually end with what we’ll call “The Great Erasures” (‘Great’ meaning ‘many’ as opposed to ‘excellent’). “The Great Erasures” are the many responses, commonly given by perplexed (and sometimes outwardly annoyed) medical providers, which serve to try to literally erase the BZ sufferer’s reality:
Medical provider: “Those drugs don’t cause that.”
“You must have abused the medication”
“The drug has been out of your system for too long for you to still be experiencing problems from it.”
“It must be something else.”
“More likely what you have is anxiety.” (This is usually followed by a suggestion for more potentially damaging psychotropic drugs.)
“This is just proof that you need the medication because stopping it has caused your ‘mental illness’ to emerge.”
“Don’t go on the internet.”
Some response that insinuates that it’s not really happening or that it’s “all in your head,” “psychosomatic”, or that the patient is a “malingerer”.
“If the drugs are making you sick, get off of them” or “Why is your taper taking so long? You should be done by now.”
“You’re just having a mid-life crisis.”
So, what are the motivations for “The Great Erasures”?
Here’s the thing: there is absolutely no doubt that long-term use of benzodiazepines causes physiological dependence and withdrawal syndromes, some of which persist for years. These are referred to as ‘protracted withdrawal syndromes’ by some experts who acknowledge they exist. There are literally thousands of medical journals attesting to this. There’s even a Wikipedia page (not that Wikipedia is a super credible source of information, but its existence is proof that information on this topic isn’t hard to find if you’re looking). In today’s age of technology, where everything is literally at your fingertips, all you have to do is ‘Google’ and you’ll find scientific literature supporting the existence of benzodiazepine withdrawal and protracted withdrawal syndromes.
People, including some medical professionals, experts, and politicians, have been “sounding the alarm bells” for decades about benzodiazepines, so no one should really claim total ignorance or act like this is “breaking news”. In 1979, Sen. Ted Kennedy led a Senate subcommittee hearing into the drug’s’ dangers. The American Psychiatric Association organized a Task Force on benzodiazepines in the 1980s. In the 1980s and early 1990s, benzodiazepines were responsible for the largest-ever class-action lawsuit against British drug manufacturers in the UK, which was unfortunately abandoned due to the high cost of litigation. From 1982-1994, Dr. Heather Ashton, psychopharmacologist and the world’s leading expert on benzodiazepines, ran a withdrawal clinic from which she developed The Ashton Manual which details how benzodiazepines work and how to safely withdraw. In 2002, the Maine Benzo Study Group, comprised of physicians and other healthcare professionals, concluded there was no evidence for long-term use. In 2016, the states of New York and Pennsylvania issued ‘prescribing guidelines’ recommending against use longer than several weeks. Nevertheless, long-term prescribing has continued and for some reason, the above has not translated into clinical practice or common knowledge, as benzodiazepines remain some of the most widely prescribed drugs in the world.
So why is the medical community so bewildered when it comes to benzodiazepine withdrawal syndromes? Why is there such a propensity towards the erasing of the victim’s real experience as well as a resistance against and/or failure to recognize that taken-as-prescribed benzodiazepines are capable of such suffering? Why do medical professionals continue to prescribe benzodiazepines, a class of drug with such a sordid history of evidence pointing to its dangers?
The answers are probably many, multi-faceted, and vary depending on who is attempting to answer them. This article, written by a physician herself, not about benzodiazepine withdrawal syndromes but about adverse effects from SSRI antidepressants (which pose similar problems), presents a few potential answers to the above questions. In summary:
- One study shows that nearly half the clinicians, when presented with patients who are experiencing symptoms widely known as reactions to certain drugs do not make the connection to the drugs.
- The little amount of time that clinicians have to spend with their patients.
- Clinicians are sometimes only presented with the positives (e.g., by Pharma reps/doctored studies) of medications, and the pitfalls are intentionally omitted.
- Cognitive dissonance is a universal human phenomenon based on the assumption that people want consistency between their expectations and reality, so people perform mental gymnastics to make that happen. Clinicians want to protect their held idea that drug interventions help as opposed to harm, so the impulse is to attribute the harm to “something else”.
- Clinicians might be abashed at the idea that, with all good intents and purposes, they weren’t aware of the potential for this outcome and have subsequently harmed a patient (also, lawsuits involving medical harm are scary and most everyone wants to avoid them at all costs).
All of those being sound and logical explanations for some of the reasons and/or motivations behind “The Great Erasures” offered by clinicians however, the reasons are probably even more convoluted when it comes to benzodiazepine withdrawal syndromes—especially ‘protracted withdrawal’.
Whether medicine recognizes protracted withdrawal (since ‘withdrawal’ in medicine usually refers to something that resolves within days or weeks of stopping a drug) and if the syndromes are better labeled ‘neurotoxicity,’ ‘symptoms that started after stopping the drugs,’ or if there needs to be an ‘official name’ which more aptly describes the illness that develops after as prescribed use and cessation of BZs is still up for debate.
This failure of medicine to recognize ‘protracted withdrawal’ is made evident by closely examining the DSM-5, psychiatry’s diagnostic ‘bible’. The book does not contain a specific diagnosis code for ‘protracted withdrawal syndrome,’ nor does it have one containing any descriptor that would indicate symptomatology persisting for any extended duration. Diagnosis codes F13.97 and F13.988 (Sedative-, hypnotic-, or anxiolytic-induced minor/major neurocognitive disorder, without use disorder) are the two diagnosis codes that most accurately indicate that there are “disorders” (disruption of the healthy or normal functioning of) of the neuro (relating to nerves or the nervous system) cognitive (relating to cognition) systems, without a history of abuse, but they still fail to describe the time sequence or duration of symptoms after stopping the benzodiazepine drugs. It is doubtful that psychiatry is in any rush to edit the DSM and add a diagnosis code which is descriptive of long-term damage; to do that is basically an admission that the drugs cause protracted harm—and no one really wants to open that can of professional suicide worms, do they?
Still, yet, there are other potential reasons why protracted BZ-sufferers are met with “The Great Erasures”:
- Clinicians are simply uneducated on the topic. Let’s face it: they don’t teach this stuff in medical schools.
- Pharma is notorious for wordsmithing (changing terms like ‘withdrawal’ to ‘discontinuation syndrome’ and ‘tranquilizer’ to ‘anxiolytic’ to make them appear more benign than they really are). They have also been exposed for hiding negative study results and only presenting favorable outcomes. And some clinicians have conflicts of interest, receiving income from Pharma for promoting their products. This argument, as a BZ-injured patient, might earn you “The Great Erasure” of “that’s a conspiracy theory!” from naive folks who have yet to peek behind the metaphorical curtain in a society that glorifies “a pill for every ill”. Advertising works. There’s a very good reason the drug companies fight so hard to maintain direct-to-consumer advertising where it’s allowed in the US and New Zealand. “Ask your doctor about ‘some new chemical agent’ today…” (and people do).
- Benzodiazepine drugs were first marketed as “safe, non-addictive anxiety medications”. Ignorance has a way of persisting, sometimes for a long time. When there is a multi-billion dollar motivation to perpetuate a lie, you can safely bet you’re probably not getting the truth.
- Benzodiazepines are controlled substances. With regulations cropping up (especially for opiates, also controlled substances and dependence-causing drugs), clinicians are pulling the proverbial plug on prescribing—even sometimes to the detriment of their patients that still require the drugs for a taper.
Pushing back against “The Great Erasures”
When patients get caught in this web of iatrogenic physical dependence to and withdrawal from benzodiazepines, they are left feeling angry, duped, and deceived (and rightfully so) by their own doctors. However, most victims of this decades-long medical scandal are reasonable enough to rationalize that their clinician wasn’t actively trying to harm them and was acting with, what they believed to be, helpful intentions when they prescribed the drugs long-term. For most, this mistake is forgivable (however, if the long-term prescribing without informed consent persists, after being informed, it then becomes an active compliance with harm).
What feels like the final and most colossal violation, however, is when the BZ-injured patients present to their clinician explaining what they know is occurring in their bodies (because it’s evidenced in thousands of medical journals and because, anecdotally, they are experiencing the same constellation of symptoms as many thousands of others in the BZ support communities—and that can’t just be “coincidence”) and how sick they are, only to be met with “The Great Erasures”. Some BZ-sickened patients have even gone so far as to liken the “The Great Erasures” to bullying and gaslighting because doctors, who have “power” by way of their white coat and who are respected as knowledgeable by their distinguished title, are basically telling the BZ-patient that what they’re experiencing is “not real” or that they’re “crazy” (“it’s all in their heads” or is “psychosomatic”):
So, let’s take a moment to draw in the truth in response to the “The Great Erasures”.
“Those drugs don’t cause that.”
They most certainly do. This is no longer up for debate. This fact has been known for decades and there is a plethora of supporting medical evidence backing it up. All one has to do is some basic research and, of course, be open to releasing strongly held confirmation bias and cognitive dissonance. Letting go of these, or admitting that you made a harmful mistake, is uncomfortable. But, you know what else is uncomfortable? Being forced to endure the most severe and long-lasting withdrawal syndrome noted in medicine, an acute shortage of GABA, and sometimes for years or alone and isolated because you can’t find help or support from the medical community. ‘Uncomfortable’ doesn’t even begin to describe that.
“You must have abused the medication.”
Medicine, including addiction specialists, actually clearly defines the difference between physiological or physical dependence and addiction. This differentiation is even evidenced in the patient handouts that accompany some benzodiazepine prescriptions, as seen in the image below:
Many people become physically dependent on substances they didn’t abuse, just by way of taking them as prescribed. It would behoove anyone prescribing drugs that are capable of causing physical dependence, by their very nature, to be capable of discerning between addiction and physical dependence and to stop blaming the patients whose bodies adapted physiologically, exactly as it is warned they will.
“The drug has been out of your system for too long for you to still be experiencing problems from it.”
While experts aren’t sure of the exact mechanisms by which protracted withdrawal occurs, (whether by way of receptor down-regulation, functional brain changes, neurotoxicity, etc.) they are sure that it occurs. There is also a litany of anecdotal evidence from many thousands of individuals who have experienced it firsthand. It can persist for years and be quite disabling and severe in some individuals.
“If the drugs are making you sick, get off of them” or “Why is your taper taking so long, you should be done by now”.
Most iatrogenically dependent patients are repulsed by benzodiazepines, once they figure out they’re the cause for most of their previously mysterious ills, and want nothing more than to get off of them forever; many feel like they’re taking a “poison” and want it out of their body. Were it that easy, you can trust that the benzodiazepine pills would be in the incinerator at the nearest pharmaceutical disposal center. It takes time for the benzodiazepine-neuro-adapted system to reverse back to baseline from the neuro-adaptation caused by the chronic presence of the drug and for some sensitive patients, even the slightest fraction of a reduction in dose still renders them disabled, causing their tapers to persist a lot longer (years) than they desire. There is no “speeding this up”—the body’s signals and emerging symptoms the ultimate guide for how quickly one can reduce—else you increase the risk for protracted withdrawal.
“It must be something else”
“Something else” that conveniently started the instant these people stopped taking a drug that is widely documented to cause physical dependence and subsequent withdrawal syndromes? “Something else” that happens to exactly mimic the ‘Common Symptoms List’ for BZ withdrawal as well as the experiences of many thousands of people whose symptoms also started the instant they reduced the drug and/or stopped it? The credibility gap here is too wide.
“You’re just having a mid-life crisis.”
A mid-life crisis, complete with akathisia and skin burning? Enough said.
“Don’t go on the internet.”
This is the only tool that saved or offered any hope to most BZ-injured people. Without the internet, a lot of these patients would be dead. The web is the only place that offers support and access to scientific information from benzodiazepine experts who have worked one-on-one with BZ-injured patients as well as anecdotal reports from other victims who have previously walked this path. If there are no available or funded in-person support groups and BZ-injured patients are getting “The Great Erasures” from the medical community, where else does one suggest these patients go for help? The internet bridges the gap and provides the truth (mixed in with lots of horrible information, like articles suggesting ‘detox’ using phenobarbital from people who clearly haven’t walked that path themselves) where it is otherwise lacking. In fact, anyone who doubts this syndrome is real should log on to the internet right now (see the response to the first “Great Erasure” #1 above). Start by clicking here. Knowledge is power.
“That’s rare” or “That’s a conspiracy theory”.
It is not rare when it happens to you.
It is not a conspiracy theory when it happens to you.
Besides, this is false. With millions of prescriptions being written worldwide and BZ protracted withdrawal syndromes occurring in an estimated 10-15% who try to stop them after long-term use (and with non-protracted withdrawal lasting up to 18 months in estimates from 50-80% of people who take these drugs past 2-4 weeks), it’s hardly what most people would call “rare”. Besides, people who have been maimed and who are subsequently being tortured alive by their own nervous systems don’t often appreciate being called an outlier, as if that somehow erases what happened or makes it any better.
Why does it matter? Aren’t “The Great Erasures” just words?
Some people in BZ withdrawal are extremely unwell, hopeless, even desperate. Some are dangerously close to ending their lives, as the more severe withdrawal syndromes can result in suicide, hallucinations, psychosis and death. As a result of the outright refusal of some of the medical community to even consider including benzodiazepine withdrawal syndrome in their differential diagnoses—offering “The Great Erasures” instead—people are being misdiagnosed, poly-drugged and damaged further.
Those who are still on their long-term benzodiazepines and who need repeat prescriptions in order to taper off properly, to minimize the severity of their withdrawal and the risk of developing protracted withdrawal, are being “cut off” or outright refused the ability to slowly taper, which is the recommended and most successful way to ensure permanent BZ discontinuation. These physically dependent people feel like puppets at the mercy of the one “pulling the strings,” the prescriber, who literally controls the fate of their sanity, long-term health, and sometimes even whether they live or die.
Iatrogenically injured people are being forced to sometimes also live with the stigma of “addiction” and the costs it inflicts in their lives, in spite of only being guilty of following medical direction and compliant use. The costs and losses are great. These are not just dismissive words. Some people are paying with many years of their lives, shattered relationships, lost jobs, financial ruin, and others even paying the ultimate price—with death.
All of this goes directly against the oath that all medical providers took to “first, do no harm” (in this instance, it should read: “the harm is done so, don’t make it worse”). Medicine is refusing to legitimize a very serious and potentially long-lasting and life-devastating illness that they are at least partially responsible for creating. So yes, it matters and it’s more than “just words”.
In the United States, a physician’s apology is protected in some jurisdictions, allowing them to offer words of condolence to their patients for adverse medical outcomes without the fear of being sued for malpractice. Many BZ-injured patients are simply asking for just that. They have expressed that a simple apology from the one who unknowingly and unintentionally injured them would go a long way, not only for forgiveness and reconciling the patient-provider relationship but for allowing healing from the trauma of what can feel like a horrible deception resulting in, for some patients, the worst thing they’ve ever experienced in their life.
The majority, if not all, aren’t looking for retribution. Unfortunately, what’s done is done—they get that. Besides, most have been rendered too sick and crippled to fight back in any legal sense. What they do want is to do their time, to get through BZ withdrawal syndrome alive, and to reclaim their lives and health; preferably they’d like to do it with the support of a medical provider who believes them. Most notably, however, they desire for it to stop happening to other people. They want their suffering to not be in vain, but instead to propagate the change that is so desperately needed. That can’t happen until everyone’s willing to see the writing on the wall, in place of the erasures, acknowledging a very real medical condition and facing the facts.
For further reading on this topic including a crowdsourced list of more dismissive statements constituting “Great Erasures,” go here.