The article “Don’t Harm Them Twice: When the Language Surrounding Benzodiazepines Adds Insult to Injury” was published on Mad in America on November 12, 2015. This is Part II.
When language has been ingrained in a culture for a long time, it takes a concerted effort to change it. How do we stop using the word “addiction” in relation to cases of iatrogenic benzodiazepine dependence? Here are a few suggestions.
For victims, advocates, and activists
Educate yourself and others and start using (and insist that others start using) the appropriate language and terminology to describe benzodiazepine use, dependence, tolerance, and withdrawal. This needs to happen whether you’re a benzo victim telling your personal story in print or on film, a patient attempting to educate your medical professional, an advocate speaking for or about a benzo victim, an author writing about benzo dependence, or a filmmaker documenting the issue. There are many reasons why using appropriate terminology in these instances is imperative.
First, if you use addiction language, you may fail to reach some of your target audience. People taking benzodiazepines as directed by their providers do not identify with being addicts. So if you write or tell a story about “benzo addiction” or “benzo addicts,” people who are personally affected may not be reached, because they are likely to think: “I’m not an addict. This story must be about someone who abused drugs, and I’m just taking a benzo that my doctor told me to take as directed, so this doesn’t apply to me.” Just like that, you will lose the ability to reach an audience that is at risk. And what are we telling these stories for if not to warn others?
Secondly, some people are repelled by or uninterested in stories about “addiction” (even if they are unknowingly dependent themselves, or know someone who is) because of the unfortunate stigma that sometimes surrounds addiction or because they feel detached from the subject. But if they understood that the situation being described is one that could happen to themselves or a family member simply by taking their drugs as prescribed, they would be more likely to pay attention. Using the right terminology keeps relevant people engaged in a story and helps to dispel the myth that benzo dependency happens only to people who abuse drugs.
Third, using incorrect terminology risks insulting or offending the very people you may be advocating for, limiting the reach of your work and the support for it. I am aware of many iatrogenic benzodiazepine sufferers (myself included) who will not distribute or support material that perpetuates the use of addiction terminology when discussing benzodiazepine dependence because it promotes misdiagnosis and mistreatment.
Fourth, when you misdescribe the iatrogenic dependence problem by using addiction language, you are, whether you intend to or not, victim-blaming and shifting the blame from where it should lie: with pharma, with the DEA, and with medical providers who fail to give informed consent, misdiagnose dependence as addiction, and mistreat patients by forcing a too-rapid or cold-turkey withdrawal, causing outcomes that can include protracted withdrawal syndrome, seizures, and death. How can we educate or evoke change if we don’t stop blaming the victims of this iatrogenic epidemic by calling them “addicts”? Many people who have experienced benzo withdrawal feel violated and horribly harmed by a once-trusted medical professional. To mislabel or mistreat them as addicts is another violation. Just as it is intolerable to turn rape victims into the accused, it is also wrong to treat iatrogenic benzo sufferers as if they deserve their suffering by using terminology that implies that they brought it upon themselves.
I myself have participated, along with other like-minded members of the benzo community, in discussions with authors and filmmakers who say that they want to use the word “addict” or “addiction” in their work about benzodiazepine dependence because they want to “grab people’s attention” and reach a wider audience. They argue that “the public is unfamiliar with what dependence is, but are aware of addiction.” While it’s everyone’s creative right to make projects using whatever language they wish, my argument has always been that anyone speaking out about benzo dependence and withdrawal carries a responsibility to honor and appropriately represent the people affected. Some may say that any kind of attention is good attention. But my opinion is no—not in a case like this, where incorrect terminology has created so much misunderstanding, leading to misdiagnosis and outcomes of harm. Sustaining wrong terminology is only counterproductive and contributes to the problem. Efforts could be better directed by using the appropriate language and defining it for readers and viewers if need be, giving them the opportunity to truly learn about iatrogenic dependence and the suffering it leads to. That is the whole point of activism—to educate and elicit change.
There are other positive steps that activists and advocates can take toward the adoption of accurate terminology, labeling, and proper diagnosis. One possibility might be to join an activist effort specific to the cause (or create one of your own). An example is Ashton Syndrome, whose mission includes establishing “Ashton Syndrome” as a formal clinical diagnosis to be treated as an iatrogenic medical illness and not a substance-abuse or mental-health issue. This group is currently supporting a proposal in the WHO ICD-11 portal to obtain a diagnosis code under their proposed moniker. Other ideas for activism include appealing to medical and regulatory bodies such as the American Medical Association (AMA), American Psychiatric Association (APA), Drug Enforcement Administration (DEA), and/or State Boards of Medicine to institute consistent and proper language and treatment protocols for benzo dependence and withdrawal.
Another hugely important step is to educate medical providers, if they are not already aware, about the complexities of iatrogenic benzodiazepine dependence and how it differs from addiction, abuse, or substance-abuse disorders (SUD) so that it’s treated as a legitimate medical problem as opposed to a behavioral issue. Many medical providers are unaware or misinformed, and unless the victims of benzo dependence and withdrawal provide them with the appropriate information, how will they learn?
Finally, in some cases, filing a complaint about negligent medical providers to your State Medical Board (or other regulatory agency, depending on where you live) may be in order, as may the pursuit of litigation and exposing any settlements publicly. Avoiding formal complaints and litigation can be a significant motivator for providers to get quickly educated about the difference between addiction and iatrogenic benzo dependence. As Malcolm H. Lader, a professor of clinical psychopharmacology at the Institute of Psychiatry at the University of London, concedes: “It’s very difficult to come off these drugs . . . and the great scandal is that the NHS [National Health Service] claims to be dealing with these people by referring them to addiction centres, where essentially they’ll sit next to a street user who’s injecting heroine, and of course a housewife who’s been put on tranquillisers by her doctor is very upset by this. . . . There is a change taking place, which is that if a general practitioner prescribes for longer than the agreed time—two weeks or four weeks—they can be sued by the patient for substandard clinical care, and I suspect in the longer term the prescribing of these drugs will be as much dependent on lawyers’ attitudes as it will be on doctors’ attitudes.”
For the medical community
First and foremost, educate yourself and start using (and insist that others start using) proper terminology that makes a distinction between addiction and dependence, and learn the correct use of terms such as tolerance. It is also paramount that you learn to recognize the symptoms of iatrogenic benzodiazepine dependence, tolerance, and withdrawal in patients and know how to manage these conditions appropriately to minimize further harm. Being informed about the true risks of iatrogenic dependence allows providers to give informed consent to patients, something every patient deserves. And if you are already educated, please educate ill-informed colleagues when the opportunity arises. For example, should you encounter iatrogenically benzo-dependent patients who have been medically mismanaged or misdiagnosed, inquire about who mismanaged them and contact those providers with accurate information to prevent the problem from being perpetuated.
Secondly, once you have familiarized yourself with the correct terminology, STOP (please!) managing iatrogenically dependent benzo patients like addicts by insisting that they rapidly taper or sending them to detox centers, as this is medically dangerous. (If patients who have been subjected to over-rapid tapers or cold-turkeys from benzos could somehow transmit their suffering to the medical profession, I am certain this problem would be quickly remedied.) If you are not familiar with slow withdrawal schedules, learn about them by reading The Ashton Manual by Dr. Heather Ashton, the world’s most respected source on benzo withdrawal. But—and this is crucial—be open-minded to patients’ own suggestions, since even the Ashton Manual’s slow protocol can be too rapid for many patients, depending on genetics, dosage, length of use, age, general health, life stressors, and other factors. Many patients learn how to taper appropriately through forums and support groups administered by people who have withdrawn over time with success, and this painstakingly-obtained anecdotal evidence should be seen as the invaluable resource that it is.
Third, be open-minded and listen to what your patients are telling you and/or read the information they present to you. I have encountered a few published pieces by physicians in which they admit to joining online patient forums and support groups for certain conditions in an attempt to learn more from patients and/or advocates for the patients. When people are suffering from debilitating health conditions, especially ones that are rare or misunderstood by the medical community, they tend to spend an immense amount of time researching medical literature and other available resources and collaborating with other afflicted individuals, making them good resources. Consider joining the online support group Benzo Buddies or similar forums as a guest, and/or read any available resources for professionals in addition to relevant medical literature.
Don’t jump to conclusions and assume that because a patient is physically dependent on a benzo, that he or she is addicted. If an incorrect assumption is made out of ignorance, it greatly benefits the doctor-patient relationship to apologize and attempt to remedy the mistake if possible. If you are suspicious but want to avoid making a wrong accusation, use tools available to you to determine the patient’s history, such as requesting past records (if you’re not the prescribing clinician) or using your state’s prescription monitoring program.
Above all, show compassion to your patients. People who are iatrogenically dependent on benzodiazepines have often been harmed by both the drugs and the medical community, most times without informed consent. Validation, empathy, patience, and support go a long way in attempting to right this wrong.
And finally, work with victims, advocates, activists, and other medical professionals to promote the changes in terminology and diagnosis coding necessary for adopting a universal language related to iatrogenic benzodiazepine use and withdrawal. Changing the language is a crucial step toward instituting the appropriate treatment protocols that are needed to create more favorable patient outcomes—making it a win-win situation for everyone.