Don’t Harm Them Twice: When the Language Surrounding Benzodiazepines Adds Insult to Injury (Part I)

[Editor’s note: The author has chosen to remain anonymous because they are currently in the midst of psychiatric drug/benzo withdrawal and wish to wait until they’re healed before they make the decision about whether or not to emerge publicly with their real name.]

Language is important. And when language dictates specific treatment protocols, it should be used with extreme scrutiny. Using the wrong words can put vulnerable people at risk—not only to their sense of self-worth, their sense of self-knowledge, and they way they are treated, but also to their health.

The psychiatric profession and the pharmaceutical industry have a long history of romanticizing language. When the word “withdrawal” was thought to evoke negative feelings in relation to psychiatric drugs, psychiatry and pharma euphemistically substituted the term “discontinuation syndrome” to lower any apprehensions in patients about taking them (or perhaps they meant “discontinuation” in the global sense—as in “discontinue your life,” “discontinue functioning,” “discontinue brain use”). When Valium got a bad rap under the label “tranquilizer,” the term “anxiolytics” was introduced to describe a newer crop of benzodiazepine tranquilizers—Xanax, Ativan, Klonopin, etc—that were more potent but carried smaller dosage labels, deceiving patients into thinking that they were taking a minimal amount when they were actually taking a dose as much as 20 times more potent than an equivalent dose of Valium (1mg of clonazepam, or Klonopin, for example, is equivalent to approximately 20mg of diazepam, or Valium).

Anyone who has been made iatrogenically dependent on benzodiazepines without informed consent knows the feeling of deception by a formerly trusted practitioner, not to mention how devastating it is to discover that one cannot stop the drug without tapering very slowly, sometimes over years’ duration, to avoid suffering severe and disabling symptoms.

Add to that the experience of being labeled and treated as an “addict,” or as someone who has a “substance use disorder”—sometimes by the very people who did this to you—and the blow is even more bitter, while the outcomes can be dire. People who blindly follow an ignorant clinician’s advice and treat their benzodiazepine dependency like an addiction—by rapidly tapering or admitting themselves to a facility for detox—may find themselves in an incapacitating and even life-threatening situation that can persist for years.

Appealing for the proper use of terminology here—“dependence” instead of “addiction”—is in no way calling for addicts to be stigmatized or treated poorly or for people who are made iatrogenically dependent to be treated superior. Instead, it’s calling for a clear distinction between the two terms that is already made (if not always understood or followed) in most respected specialties of medicine, ensuring that individuals who have iatrogenic physical dependence are treated appropriately. In the case of benzodiazepine dependence, mistreatment—treating it the way one would treat an addiction—can result in potentially fatal seizures, psychosis, or suicide as well as years of infirmity due to protracted withdrawal syndromes. The stakes of using the appropriate terminology in this case couldn’t be higher: in medicine, diagnosis terminology defines protocol and treatment and therefore ultimately determines the outcome for the patient.

A WAR OF WORDS: THE DSM AND DEPENDENCE

Frequently referred to as the DSM, or “psychiatry’s bible,” the Diagnostic and Statistical Manual of Mental Disorders by the American Psychiatric Association provides criteria to be used by clinicians as they evaluate and diagnose various so-called mental health conditions. The current version, the DSM-5, includes a new chapter on “Substance-Related and Addictive Disorders” that focuses on “substance-use disorders” (SUDs) and “substance-induced disorders,” offering revised criteria for categorizing a variety of disorders and suggesting a range of severity within each diagnostic category.

Before exploring the current DSM-5 terminology, however, let’s go back and look at the previous edition, the DSM-IV, because the terminology used in that version continues to cause confusion. The DSM-IV divided substance-use disorders into two types: “substance abuse” and “substance dependence.” At a glance this terminology may seem appropriate—one might assume that “substance abuse” refers to the abuse of a drug and “substance dependence” refers to mere physical dependence (in medicine,“dependence” is typically used to describe the body’s adaptation to a consumed substance without necessarily implying abusive behavior). But that’s not what the terminology meant in the DSM-IV. In the DSM-IV, the label “substance abuse” was used to describe an earlier or less-severe form of addiction, while “substance dependence” was given to a more-severe manifestation of the disorder. Baffled yet? Many clinicians certainly were.

The editorial below from the American Journal of Psychiatry sheds some light on the DSM-IV’s choice of terminology. Apparently the committee for the DSM-IV had opted for the term “dependence” in place of the word “addiction” in part because “addiction” was thought by some to sound pejorative. The authors of this editorial, arguing for revised terminology, point out that the term “dependence” as used in the DSM-IV only served to confuse clinicians, with the result that patients suffered:

There was good agreement among [DSM-IV] committee members as to the definition of addiction, but there was disagreement as to the label that should be used. The proponents of the term “addiction” believed that this word would convey the appropriate meaning of the compulsive drug-taking condition and would distinguish it from “physical” dependence,” which is normal and can occur in anyone who takes medications that affect the CNS. Those who favored the term “dependence” felt that this was a more neutral term that could easily apply to all drugs, including alcohol and nicotine. The committee members argued that the word “addiction’” was a pejorative term that would add to the stigmatization of people with substance use disorders. A vote was taken at one of the last meetings of the committee, and the word “dependence” won over “addiction” by a single vote.

The term “dependence” has traditionally been used to describe “physical dependence,” which refers to the adaptations that result in withdrawal symptoms when drugs . . . are discontinued. Physical dependence is also observed with certain psychoactive medications, such as antidepressants and beta-blockers. However, the adaptations associated with drug withdrawal are distinct from the adaptations that result in addiction, which refers to the loss of control over the intense urges to take the drug even at the expense of adverse consequences. For example, research has shown that when opiates are administered to a naive animal, adaptation begins to occur after the first dose so that the second dose has a discernibly decreased effect from the first. After several days of taking the medication, abrupt cessation produces a withdrawal syndrome varying with the duration of treatment and the dose level. This is an expected pharmacological response, and although it may occur among addicts, it is quite distinct from compulsive drug-seeking behavior. This has resulted in confusion among clinicians regarding the difference between “dependence” in a DSM sense, which is really “addiction,” and “dependence” as a normal physiological adaptation to repeated dosing of a medication. The result is that clinicians who see evidence of tolerance and withdrawal symptoms assume that this means addiction, and patients requiring additional pain medication are made to suffer. Similarly, pain patients in need of opiate medications may forgo proper treatment because of the fear of dependence, which is self-limiting by equating it with addiction. . . .

In the case of substance use disorders, the medical world drastically needs a change in labeling. Addiction is a perfectly acceptable word. It is used by the American Society of Addiction Medicine, the American Association of Addiction Psychiatrists, the American Journal on Addictions, and the oldest journal in the field, simply known as Addiction. It is clear that any harm that might occur because of the pejorative connotation of the word “addiction” would be completely outweighed by the tremendous harm that is now being done to the patients who have had needed medication withheld because their doctors believe that they are addicted simply because they are dependent.

And so, it was decided to merge the DSM-IV’s terminology of “substance abuse” and “substance dependence” into one entity called “substance-use disorders” (SUD) in the DSM-5.

In outlining their revisions to the DSM-5, the American Psychiatric Association did issue a clarification acknowledging that addiction and physical dependence are not synonymous: “The diagnosis of dependence caused much confusion. Most people link dependence with ‘addiction’ when in fact dependence can be a normal body response to a substance.” But their clarification does little good if medical providers remain addled by the previous DSM-IV terminology and are unable to differentiate addiction/abuse from iatrogenic dependence. Such lingering confusion could lead to people being wrongly diagnosed and treated under the diagnosis of “substance abuse disorder” (SUD) when they are merely physically dependent. The reason this is inevitable is because there is no separate and distinct diagnosis for iatrogenic physical dependence alone.

The following image shows a comparison between the diagnostic criteria used in the DSM-IV and the DSM-5: (Image Source)

In practice, patients who present with tolerance and withdrawal only, even though they meet two of the symptom criteria above, are not meant to be diagnosed as having “SUD-Mild” if they are taking the drug under medical supervision.

Since there is no separate or distinct diagnosis for this condition, patients may still find themselves misdiagnosed with SUD (addiction) according to the DSM-5 criteria. For example, interdose withdrawal—withdrawal between doses due to a drug’s short half-life—might be mistaken for “craving.” And if you look at the criteria for therapeutic dose dependence in The Ashton Manual, many patients who are iatrogenically dependent could easily meet the “repeated attempts to quit” criterion if, say, their attempts to quit cold-turkey, or to taper too quickly, produce intolerable withdrawal symptoms. As for “using larger amounts,” many people prescribed a benzo end up having their dose increased over time by their prescriber due to tolerance, while “physical/psychological problems related to use” are seen with tolerance as well, even when a benzo is used only as a doctor prescribes.

So what should people who present with only tolerance and withdrawal (after taking a prescribed benzo) be diagnosed with, according to the DSM-5? Are there really no options for diagnosing iatrogenic benzodiazepine dependence that don’t include substance-use criteria? Take a look at the image below, which is a listing of all available DSM-5 diagnoses with corresponding ICD codes for sedative, hypnotic, anxiolytic use:

Underlined in yellow are the substance-induced disorders, indicating a number of “disorders” that are not accompanied by a “use disorder” (that is, a substance-use disorder). These include withdrawal as well as intoxication and other substance/medication-induced “mental disorders” (e.g., sleep disorders, neurocognitive disorders, sexual dysfunction, anxiety disorder, or depressive disorder). Would any of those fit the bill?

Let’s think this through. Any psychopharmaceutical intervention with benzodiazepines that lasts more than the recommended two to four weeks, resulting in dependence, tolerance, withdrawal, or toxicity, seems to become a self-fulfilling prophecy. In other words, if people take benzos long-term as directed and go on to inevitably develop physical dependence, which then causes symptoms such as neurocognitive dysfunction or depression, they could wind up with a “substance-induced” disorder diagnosis on top of the diagnosis that led them to be prescribed a benzo to begin with. That means that even if a person’s initial diagnosis was a purely physical condition (such as muscle spasms), that person could still wind up with a “disorder” label (i.e., a substance-induced disorder) according to the DSM-5 criteria. So if people don’t have a “disorder” or psychiatric label prior to taking the drugs, they most certainly can after (despite physical dependence being an expected, normal physiological response). How convenient a trap for psychiatry to set.

If this all seems hopelessly convoluted, it’s because it is. The lack of clear terminology to describe iatrogenic dependence and withdrawal related to benzos can have outcomes that are devastating for the patient. There is no way around it: we need to start using unambiguous and universal terminology that is accepted by all medical specialties and make a distinction between physical dependence and addiction once and for all.

Exactly why is clear and universal language so important? Because the standard protocol and treatment for SUD/addiction/abuse can be devastating for someone with iatrogenic benzodiazepine dependence—a detoxification program, cold-turkey withdrawal, a rapid taper, and/or attendance at a 12-step program to address the behavior of addiction. We know from The Ashton Manual, written by Dr. Heather Ashton, the world’s leading expert on benzodiazepines, that it is crucial that withdrawal from benzodiazepines not be treated in the same way as addiction:

There is absolutely no doubt that anyone withdrawing from long-term benzodiazepines must reduce the dosage slowly. Abrupt or over-rapid withdrawal, especially from high dosage, can give rise to severe symptoms (convulsions, psychotic reactions, acute anxiety states) and may increase the risk of protracted withdrawal symptoms. Detoxification centres which also deal with alcohol and illegal drugs are not appropriate for prescribed benzodiazepine users. Such clinics tend to withdraw patients too rapidly, apply rigid rules and “contract” methods, and provide inadequate support or follow-up.

Similarly, a consensus statement released by The American Society of Addiction Medicine, The American Academy of Pain Medicine and the American Pain Society states: “When drugs that induce physical dependence are no longer needed, they should be carefully tapered while monitoring clinical symptoms to avoid withdrawal phenomena…Such tapering, or withdrawal, of medication should not be termed detoxification.”

Given that the DSM-5 doesn’t have a category for iatrogenic withdrawal syndrome related to benzos, it’s not surprising that it also doesn’t acknowledge the existence of protracted withdrawal syndrome—a severe form of withdrawal that can cause symptoms that continue as long as several years after a benzo is out of the body. But this lack is troubling, because enlightened medical experts (and many victims) feel that referring to this condition as “withdrawal” or “withdrawal syndrome” does not accurately describe the enormous long-term damage involved, nor does it suggest the extremely slow tapering protocol that is necessary for preventing it. It also fosters the misconception that withdrawal is the result of addiction, or that it should resolve over the course of weeks.

It is precisely this confusion that Dr. Stuart Shipko notes regarding the language used to describe a related syndrome resulting from the discontinuation of SSRIs. He writes:

Protracted withdrawal needs a better name.  The term “protracted withdrawal” does describe the time sequence of symptoms after stopping serotonin based antidepressants, but is a poor choice of language when discussing this with your doctor.  Medicine does not recognize such a thing as protracted withdrawal.  Withdrawal is considered something that goes away within days or weeks of stopping a drug.  If you are going to talk to your doctor about these sorts of problems, then it is best to describe the problem as symptoms that happened after stopping the drugs.  I realize that many physicians will declare these new symptoms the start of a new mental illness—usually bipolar—but calling it protracted withdrawal just confuses the doctor…I refer to protracted withdrawal as drug neurotoxicity.

It seems that a similar argument could—and should—be made for iatrogenic benzodiazepine cessation. Perhaps incorporating a new moniker such as “drug neurotoxicity” would help in the goal of making crucial distinctions and give this condition the universal platform that is so desperately needed.

COMING TO TERMS: THE DEFINITIONS

An acquaintance who is iatrogenically dependent on the benzo Klonopin and is in the process of tapering recently shared the text below, included in a new leaflet attached to her prescription:

“Your healthcare provider can tell you more about the differences between physical dependence and drug addiction,” it states. Is that so? If you asked most people who have been iatrogenically dependent on a benzo, now or in the past, you would likely discover just how far behind the medical community is when it comes to discerning between the two. The fact is, if benzo dependence were diagnosed correctly and patients treated accordingly, there would not be any presenting cases of cold-turkey withdrawal. Yet, sadly, at alarming rates, rehabs and detox centers are essentially cold-turkeying unsuspecting people who are desperate to be free of these drugs and charging significant sums of money—only to send people home sick and indigent to face what may be years of suffering in protracted withdrawal syndromes.

As for those people who do not resort to rehab or detox centers, they are constantly scrambling and struggling to find medical providers who are understanding and educated or at least “benzo-cooperative” and willing to prescribe the drug in a way that allows for a slow, controlled taper (even if the providers know little about benzo withdrawal themselves). There is so little understanding in the medical community about iatrogenic benzo dependence that some patients simply cannot find a prescriber to work with them this way and end up having their prescription cut off by someone who (for whatever reason) feels they should get off the drug sooner.

So when people find themselves caught in this cobweb of iatrogenic benzodiazepine dependence it feels like this: The medical community renders you dependent on these drugs, most often without informed consent or fair warning about their potential for dependence and severe withdrawal. You take the prescription compliantly as directed by your medical provider. Then, once you experience tolerance symptoms or become dependent and are facing withdrawal, your medical provider either turns his or her back on you—in some cases treating you like a drug-seeking addict and refusing to provide the repeat prescriptions you need for a slow and controlled (by you) reduction plan—or else your provider has no clue how to manage benzodiazepine withdrawal at all.

Consider the first two steps in The Ashton Manual—the most respected guide on benzos—under “Before Starting Benzodiazepine Withdrawal”: 1. Consult your doctor or pharmacist and 2. Make sure you have adequate psychological support. Perhaps those initial two steps are more easily achieved in the U.K., where Dr. Ashton is based, but in the U.S., the first step can be impossible, for all the reasons given above, and the second is made extremely difficult when family, friends, doctors, therapists, and much of society considers you an addict or drug abuser and discriminates against you, treats you poorly, or makes statements like “you just need to stop using the drugs.” An overwhelming number of iatrogenically benzo-dependent people are shunned or abandoned by friends and family who might otherwise help and support them through withdrawal if they only understood that dependence is a result of negligence on the part of the medical profession and not a result of abusing the drugs.

A consensus statement released by The American Academy of Pain Medicine, the American Pain Society, and the American Society of Addiction Medicine sought to define the terminology and recommended their definitions for use. The definitions presented in the consensus Statement are as follows:

Addiction:
Addiction is a primary, chronic, neurobiological disease, with genetic, psychosocial, and environmental factors influencing its development and manifestations. It is characterized by behaviors that include one or more of the following: impaired control over drug use, compulsive use, continued use despite harm, and craving.

Physical Dependence:
Physical dependence is a state of adaptation that is manifested by a drug class specific withdrawal syndrome that can be produced by abrupt cessation, rapid dose reduction, decreasing blood level of the drug, and/or administration of an antagonist.

Tolerance:
Tolerance is a state of adaptation in which exposure to a drug induces changes that result in a diminution of one or more of the drug’s effects over time.

The consensus statement goes on to explain the reasoning for defining the terms:

Physical dependence, tolerance and addiction are discrete and different phenomena that are often confused. Since their clinical implications and management differ markedly, it is important that uniform definitions, based on current scientific and clinical understanding, be established in order to promote better care of patients…

Clear terminology is necessary for effective communication regarding medical issues. Scientists, clinicians, regulators and the lay public use disparate definitions of terms related to addiction. These disparities contribute to a misunderstanding of the nature of addiction and the risk of addiction. Confusion…results in unnecessary suffering, economic burdens to society, and inappropriate adverse actions against patients and professionals.

In countries such as the U.K., where there is universal healthcare, uniform definitions and treatment protocols for benzodiazepine dependence are available for all specialities to reference and follow in the British National Formulary. Yet even in the U.K., many advocates still refer to the benzodiazepine epidemic using addiction terminology, albeit putting the word “involuntary” or “accidental” before “addiction” (which might imply that the person was rendered iatrogenically dependent and then, at some point, began abusing the drugs). In the U.S., where healthcare bodies and regulations operate with less coordination, there are even more inefficiencies when it comes to uniformity, contributing further to the problem.

The simple fact is that much confusion could be resolved if medical professionals would actually listen to what their patients are telling them, much in the same way Dr. Ashton was attentive to the patients she encountered in her clinic. As described by her in The Ashton Manual:

For twelve years (1982-1994) I ran a Benzodiazepine Withdrawal Clinic for people wanting to come off their tranquillisers and sleeping pills. Much of what I know about this subject was taught to me by those brave and long-suffering men and women. By listening to the histories of over 300 “patients” and by closely following their progress (week-by-week and sometimes day-by-day), I gradually learned what long-term benzodiazepine use and subsequent withdrawal entails. Most of the people attending the clinic had been taking benzodiazepines prescribed by their doctors for many years, sometimes over 20 years. They wished to stop because they did not feel well. They realized that the drugs, though effective when first prescribed, might now be actually making them feel ill…It is interesting that the patients themselves, and not the medical profession, were the first to realize that long-term use of benzodiazepines can cause problems.

ALONG SIMILAR LINES: DEPENDENCE AND OTHER DRUGS

To understand how ridiculous is it to lump individuals who’ve been made physically dependent on a substance with those who have substance abuse, addiction, or substance use disorder (SUD), consider that it is widely recognized in the medical literature that physical dependence can develop with the chronic use of many classes of medications. These include beta blockers, alpha-2 adrenergic agents, corticosteroids, proton pump inhibitors, antidepressants, and other drugs that are not associated with addictive disorders. One would be hard-pressed to find, say, a cardiologist who would prescribe a hypertensive patient long-term beta-blocker therapy, then diagnose that patient with “addiction” or “SUD” simply because the individual developed tolerance, dependence, and/or withdrawal symptoms when attempting to stop the drug. Equally preposterous would be the idea of sending that patient to a rehab or detox program to deal with his or her “beta blocker addiction,” only to be cold-turkeyed and sent home in a state of beta-blocker withdrawal, a syndrome of sympathetic overactivity that can include agitation, headache, sweating, and nausea as well as rapid upswings in blood pressure or exacerbation of cardiac disease.

Some clinicians (but not nearly enough) are now aware that antidepressants can also cause physical dependence and withdrawal syndromes when used as directed over a long term. In fact, SSRI withdrawal syndromes share many of the symptoms that are characteristic of benzodiazepine withdrawal. But here is where the need for accurate terminology comes glaringly into play.

Consider a case in point: one Danish meta-analysis asserts that antidepressants lead to addiction, but the study’s conclusion is met with serious reservations. Among those objecting is Lars Vedel Kessing, clinical professor and attending physician at the Psychiatric Centre Copenhagen, who argues that SSRIs are not addictive. “Before you can categorize something as addictive there has to be an onset of four fundamental symptoms,” he states:

1. First, you lose control and the desire to take the drug becomes compulsive. In some sense you could say the drug takes control of you.
2. Next is the onset of tolerance.The dosage must be increased all the time to get the desired effect and you keep taking more and more of the drug.
3. Directly related to this is the third symptom; a strong urge to privately obtain more of the drug so it can be taken without the physician’s knowledge.
4. Lastly, there will be a detrimental effect to the individual who will no longer be able to function socially or physically.

Kessing goes on to say: “Not a single one of these phenomena are present in SSRI discontinuation syndrome, but all four are present in treatments with benzodiazepines.”

Now, let’s go back to the Danish meta-analysis. If its authors had used proper terminology, indicating that both antidepressants and benzodiazepines cause physical dependence that leads to similar withdrawal syndromes, their claim would have been accurate. But because they argue that both classes of drugs are “addictive” and should be classified as such, Kessing makes a counterclaim that is only partially correct. Where Kessing is mistaken is in his final statement that “all four [symptoms] are present in treatments with benzodiazepines.” The fact is—and this distinction could not be more fundamental—all four symptoms are present only in people who abuse or are addicted to benzodiazepines and are not seen in those who are made iatrogenically dependent on the drugs in the same way that SSRI dependence occurs.

This point is made clear in a quote from Dr. Heather Ashton, based on a dozen years spent running a withdrawal clinic to help over three hundred individuals withdraw safely from the benzodiazepines they had been prescribed:

Benzo victims bravely work to return their nervous systems to acceptable function. They must continue to use decreasing dosages of the harmful drug until those nervous systems can run without the GABA agonist. This need is hard for victims to accept. They feel trapped because they must use a poison to safely come off of a poison. They suffer horribly as they work to repair the harm done by a formerly trusted MD. These victims certainly have no cravings or desire to use benzos. When you assume that what is true of addictive-drug patients is true of benzo victims, you have doubly harmed these victims.

Unfortunately, however, Kessing’s opinions are often shared by other misinformed clinicians, leaving people who are physically dependent on benzodiazepines to be thrown to the wolves and in dire need of support as they attempt to discontinue their prescribed drug safely in a slow taper. And while the withdrawal symptoms for benzodiazepines and antidepressants can be very similar, we do not generally see antidepressant-dependent patients being forced into rehab centers, labeled as “Prozac addicts” or “Effexor addicts,” or treated as if they were drug seekers or abusing their drugs. It is safe to say, too, that people who are dependent on SSRIs are unlikely to find themselves searching desperately for an “SSRI-cooperative” physician willing to prescribe them repeat prescriptions of, say, liquid Prozac in order to complete a slow, gradual taper off the drug. The same is sadly not true for vast numbers of people made iatrogenically dependent on benzodiazepines.

Perhaps one reason benzo-dependent individuals encounter so much resistance and misunderstanding from medical professionals, compared to those who are dependent on antidepressants or beta-blockers, is because benzos are classified as schedule IV controlled substances, while SSRIs and beta-blockers are not. A real paradox, then, lies in the fact that the DEA defines schedule IV drugs as “drugs with a low potential for abuse and low risk of dependence.” Anyone who has ever been rendered iatrogenically dependent on benzodiazepines, then tried to reduce their dose, may well respond to the phrase “low risk of dependence” with side-splitting laughter or a shiver of disgust. The fact is that benzodiazepines are so inherently dependence-causing (sometimes in as little as a few weeks) that, for those who experience it, the state of benzo dependency feels as though the drug has deeply penetrated the cytoplasm of one’s neurons and attached to the GABA receptors with the tenacity of a limpet.

Rather than comparing benzodiazepines to beta blockers and SSRIs, then, perhaps a more appropriate comparison would be to opiate narcotics, which are also classified as controlled substances (although, arguably, the withdrawal from benzos can be far more dangerous, painful, and long-lasting). Most (good) pain management specialists recognize that chronic use of opioid analgesics can result in tolerance, dependence, and withdrawal symptoms when discontinued. If, for example, a patient suffers from painful burns resulting from a fire and takes opiates over a long term as prescribed by a pain-management clinician, it would likely be understood that any development of tolerance, dependence, and/or withdrawal symptoms upon cessation of the drug would be an expected pharmacological response and not evidence of “addiction” or “abuse” or “SUD.” It would also be understood that the opiate needs to be tapered slowly after the burns heal and the pain subsides.

From a WebMD article on pain management: “Probably not a week goes by that I don’t hear from a doctor who wants me to see their patient because they think they’re addicted, but really they’re just physically dependent,” says Scott Fishman, MD, professor of anesthesiology and Chief of the Division of Pain Medicine at the University of California Davis School of Medicine. Notes Susan Weiss, PhD, Chief of the Science Policy Branch at the National Institute on Drug Abuse, in the same article: “Physical dependence, which can include tolerance and withdrawal, is different. It’s a part of addiction but it can happen without someone being addicted.” Weiss goes on to say that if people have withdrawal symptoms when they stop taking their pain medication, “it means that they need to be under a doctor’s care to stop taking the drugs, but not necessarily that they’re addicted.” Marvin Seppala, MD, Chief Medical Officer at the Hazelden Foundation, concurs: “The vast majority of people, when prescribed these medications, use them correctly without developing addiction.”

Every one of the quotes in the paragraph above can be applied to iatrogenic benzo dependency. So where are the medical professionals who are advocating for understanding, compassion, and proper care of the patients to whom they themselves have prescribed these drugs?

GETTING ON THE SAME PAGE

When it comes to benzodiazepines, confusion and misunderstanding around terminology, definitions, and classifications is not just a matter of semantics—it has very real implications for human beings whose quality of life is at stake, and who—if their providers get it wrong—face the possibility of years of inhumane suffering in protracted withdrawal syndromes. The medical community cannot have it all ways: they need to get on the same page. Yet in the more than 50 years since benzodiazepines were first introduced, this has yet to occur, and as a result, people who find themselves (through no fault of their own) iatrogenically dependent on benzos are met with one of the following responses, depending on how enlightened their provider may be:

1. Patients are told that the drugs are “safe,” “non-habit forming,” or “not addictive” and “don’t cause withdrawal” and that “the symptoms are all in your head” or “from something else,” as benzos are an “effective treatment.”
2. Patients are refused a renewed prescription for the benzo, despite being already iatrogenically dependent on it, based on the logic that the drugs are “addictive” or “cause dependence” or “are dangerous.” Of course, this is the very information that should be provided as part of informed consent prior to ever prescribing the drugs—and is a moot point once a patient is already physically dependent and needs a continual supply in order to taper.
3. As soon as patients experience withdrawal symptoms upon trying to stop, or from making too large a reduction in dose (usually out of ignorance of their iatrogenic dependence and the need for a slow taper), they are told that their symptoms are evidence of “the return of the underlying condition”—i.e., “mental illness”—and demonstrate the ongoing “need” for the drugs. Of course, this reasoning makes little sense in light of the fact that many people are prescribed benzos for non-psychiatric medical conditions—everything from restless leg syndrome to Lyme disease to facial tics to insomnia—and experience the same withdrawal symptoms (some of which mimic psychiatric disorders) as everyone else.
4. Patients are told just the opposite—that their withdrawal symptoms are “evidence of addiction” and that they should stop the drugs right away without tapering, or through a too-rapid taper in a detox facility, leaving them in a state of protracted withdrawal that potentially lasts for years.
5. Patients are extremely lucky (and one of the rare few) to encounter a “benzo wise” or “benzo cooperative” practitioner who recognizes and diagnoses iatrogenic dependence and agrees to prescribe the benzo for a slow, controlled (by the patient) taper in order to discontinue safely. (Finding a practitioner who realizes just how slowly some benzo tapers need to be in order to avoid severe withdrawal symptoms would be like finding the Holy Grail.)

I suppose it is tempting, if the only tool you have is a hammer, to treat everything as if it were a nail. But this matters, profoundly, when you are the nail. Being mislabeled as an “addict” when you are not can potentially lead to serious consequences, such as the loss of a license or professional career. Being told that one’s withdrawal symptoms are a sign of a “resurfacing” mental disorder (when they are not) can be equally damaging. And which is it, anyway? Are people who’ve been prescribed benzos (for whatever reason) addicts who need to get off the drug immediately, or are they mental patients who need to stay on the drug for life? Depending on whom you ask, you’re likely to get a multitude of answers—and there lies the problem. There is no consistency among the medical community, and the people who suffer from this lack of clarity are the patients.

The ultimate goal, of course, would be for medical providers to adhere to the recommended 2-4 week (including tapering) prescribing guidelines for benzodiazepines and prevent the problem of benzodiazepine dependence and withdrawal from ever happening. But until that comes to pass, and while countless people have been made dependent and left to navigate the symptoms of tolerance and withdrawal on their own, something fundamental must change. To those who insist on labeling people: at least learn the terminology and apply it correctly, so that people stop suffering at the hands of ignorance. We need to make sure that the uniform definitions of terms such as addiction, dependence, and tolerance are accepted and used by clinicians, regulators, and the public both nationally and internationally, to ensure the appropriate treatment of iatrogenic benzodiazepine dependence throughout the world.

We all know that medical professionals take an oath to do no harm. But in the case of iatrogenic benzodiazepine dependence, patients are harmed, first when prescribers abuse the drugs themselves by prescribing them for longer than their own regulations recommend, without informed consent from the patient about the potential for dependence, tolerance, and horrific withdrawal syndromes with longer use. And patients are harmed twice when the medical profession fails—or refuses—to recognize tolerance, interdose withdrawal, and physical dependence for what they are, but insists instead on misdiagnosing and mistreating these phenomena as “addiction” or the recurrence of “underlying mental illness” when their patients make a good faith effort to stop taking the drug.

Part II of “Don’t Harm Them Twice,” which focuses on suggestions for how to appropriate accurate terminology, will appear in a future edition of Mad in America.

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Special thanks to TK, phenomenal editor and benzo comrade, for your time and editing skills on this piece. My cognitively-impaired “benzo brain” could not have brought it to fruition without you. Thanks also to LD, SS, JF, AN, and LM for your input, continual encouragement, and unwavering support.

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REFERENCES:

“4.1 Hypnotics and Anxiolytics : British National Formulary.” Benzo.org.uk. 1 Nov. 2013. Web. 4 Sept. 2015. <http://www.benzo.org.uk/BNF.htm>.

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