I can’t believe I have to say this, but brain and neurological injuries are not addictions. One way that benzodiazepine-damaged patients are silenced is being forced to defend themselves against the addiction narrative that is attributed to them every time they share their experience. We need to find a way out of this dangerous loop.
Withdrawal symptoms experienced during cessation can persist for months to years after the last dose.
What people misunderstand about benzodiazepine harm is this: Benzodiazepine withdrawal is widely regarded as the most difficult and dangerous withdrawal of any class of drug. Withdrawal symptoms experienced during cessation can persist for months to years after the last dose. Medicine typically recognizes withdrawal as something persisting for weeks and then resolving. As a result, the protracted symptoms reflective of chronic illness are often attributed to other problems, unidentified by doctors as benzodiazepine-related. When these patients seek medical help, their harm often goes challenged or misdiagnosed since medicine overwhelmingly seems undereducated or in denial about prescribed harm, withdrawal, and the complicated art of deprescribing. As a result, patients report a frustrating inability to find any meaningful help within the same system that prescribed them benzodiazepines to begin with.
Getting Past Addiction Language
I wish we could start over with an entirely new language to discuss this problem. Initially, the benzodiazepine-harmed patient groups of the 1970s through the early 2010s used the word ‘addiction’ to describe their plight. Their rationale in doing so was that the problem would get more attention if it were viewed as a medical scandal — doctors and pharmaceutical companies making involuntary “addicts” out of unsuspecting patients.
Their rationale in doing so was that the problem would get more attention if it were viewed as a medical scandal — doctors and pharmaceutical companies making involuntary “addicts” out of unsuspecting patients.
This approach backfired, only serving to create blame, shame and further harm to patients. Instead of medicine introspecting about the iatrogenic harm being caused to patients, those made physically dependent on benzodiazepines were now blamed by medicine, denied repeat prescriptions required to taper and/or forced to rapidly “detox” or “cold turkey.” This is disastrous as too-rapid cessation increases patients’ chances of developing long-term, severe and disabling withdrawal syndromes.
Because of the ineffectiveness and resulting negligence from the above approach, Benzodiazepine Information Coalition (BIC) has campaigned heavily to educate that addiction and physical dependence are distinct phenomena that should not be conflated so as to reduce patient harm, prevent forced withdrawals, and to advocate for already-physically-dependent patients to be allowed to stay on the medication, if they wish, or to taper at a self-determined pace. While our efforts have manifested some tangible mainstream change, it’s not enough. This problem needs a name that is an adequate descriptor or people will continue to misunderstand and patients will continue to be negligently mistreated and harmed.
Language Influences Outcomes
Universally-recognized and accurate language would be a way to distinguish ourselves from the fallacious abuse and addiction narrative that has fully infiltrated the media and medicine. It would also save us the frustration of about 500 words (or more) in every pamphlet, blog, interview or explanation given about the problem as we would have an accurate name to reference instead. One woman from the benzodiazepine-harmed community likened this terminology struggle to trying to explain the nuances and issues surrounding slavery without using the word slavery. It is very limiting, time-consuming and makes the real problem, in a world of soundbites, word counts and attention-grabbing headlines, lost in the explanation.
We are not alone here. Being silenced by language for having an invisible illness has happened amongst other patient groups as well. Like benzodiazepine-harmed patients, those diagnosed with what was once called ‘Chronic Fatigue Syndrome (CFS)’ attribute much of their mistreatment to that name. According to a New York Times article on the topic, the CFS label “often elicits very trite comments, possibly intended to be humorous, like ‘I’m tired, I must have that too.’” CFS/ME patients, like benzodiazepine patients, are also often disbelieved and develop trauma around their experience with their doctors. Dr. Nancy Kilmas, an expert in ME/CFS, shares an observation whose sentiment most benzodiazepine-harmed patients can identify with: “They came to a doctor with Chronic Fatigue Syndrome; they left the doctor with PTSD.”
“They came to a doctor with Chronic Fatigue Syndrome; they left the doctor with PTSD.”
Most patients now prefer the term ‘Myalgic Encephalomyelitis (ME)’ to more accurately describe their condition. A quote by Dr. Byron Hyde, a ME expert, regarding the CFS vs ME debate, resonates deeply as it is relevant to the benzodiazepine problem as well: “You can’t start on a false premise and make it better.”
The “Floxies,” harmed by fluoroquinolone antibiotics like Levaquin and Ciprofloxacin, are another patient group forced to band together and advocate for themselves. The FDA received reports for decades detailing hundreds of thousands of “serious adverse events” resulting from the antibiotic class. In 2015, the FDA voted to recognize Fluoroquinolone Associated Disability (FQAD) as a syndrome on the basis of 178 cases that the agency regarded as clear-cut. This recognition came with new FDA black box warnings, class action suits and subsequent research. While the fluoroquinolone problem is far from solved, as many patients remain permanently disabled and the drugs are still overprescribed, it has at least been recognized and given an official name. In spite of overwhelming numbers of cases on file with the FDA, the same cannot be said for benzodiazepine-induced harm. This lack of recognition may be one reason why there is still inaction and a lack of pharmacovigilance for benzodiazepines after all this time.
Like the ME and the Floxie communities, a plethora of online benzo patient awareness and support groups have emerged. These groups don’t exist because medicine is handling things well, but instead are a sign of the magnitude of impact that continued mislabeling is having on real patients and their lives. The discussions within the groups center around the severity and duration of symptoms and trying to survive the secondary wreckage faced in other aspects of life (financial, social, employment, etc.) resulting from benzo harm. Addiction-related talk barely exists. The groups are much closer to a cancer forum in comparison, except our “cancer” doesn’t typically exist in the minds of many medical providers and nobody outside of those living with it and their families seems to care.
The groups are much closer to a cancer forum in comparison, except our “cancer” doesn’t typically exist in the minds of many medical providers and nobody outside of those living with it and their families seems to care.
We Cannot Fix What We Cannot Communicate
At BIC, we often receive inquiries from journalists and other media outlets wanting to do a piece on “benzo addiction.” Our organization then will ask which “addiction” they are referring to — real addiction, or physical dependence and other prescribed harms that are just being misclassified under the addiction umbrella? This usually prompts a discussion about the differences and results in (mostly) accurate terminology used in the final media story. Unfortunately, BIC isn’t consulted for every piece out there and the internet is littered with dangerous misinformation from media outlets around this issue. How can consumers and the public get informed if this is what we are up against?
Seeking help from the medical field doesn’t typically go any better. Instead of having their damage addressed, chronically-ill benzodiazepine patients are often forced to see addiction medicine specialists. As one may expect, these addiction medicine specialists tend to see every patient through an addiction lens. They, like many medical professionals, are often clueless about the level of harm benzodiazepines can cause and often invalidate benzodiazepine-harmed patients with observations and diagnoses such as “unwillingness to get better,” “malingerer” or “underlying mental illness.” Some professionals are more sympathetic but still remain unable to provide any useful help simply due to a lack of education and scant benzodiazepine-harm focused research around effective treatments.
Benzodiazepines are known to impact GABA-A, a receptor site that impacts nearly everything in the body. They also are associated with many system-wide problems including, but not limited to thyroid, menstrual irregularities, cancer, miscarriage and even Alzheimers. It isn’t a stretch to take it further and say they may profoundly impact a patient’s health adversely; the possibilities for what could be occurring are enormous. Stephen LaCorte, J.D. who serves on BIC’s Board of Directors, wrote an extensive paper where he hypothesizes as to one potential cause of benzodiazepine pathophysiology. He states:
Once triggered, the elements of the NO/ONOO(-) cycle perpetuate pathophysiology, perhaps including reduced GABAA receptor functioning, that may explain protracted withdrawal associated symptoms while the vicious cycle nature of the NO/ONOO(-) cycle may explain how withdrawal becomes a chronic state.
These are the types of questions medical researchers should be asking. What physiological changes have been induced by taking benzodiazepines as prescribed? The answers to questions like these and similar might one day alleviate the suffering of those harmed by prescribed benzodiazepines. We will never have answers if the “addiction” status quo persists.
We will never have answers if the “addiction” status quo persists.
Getting An Accurate Name
Benzodiazepine-harmed patients, already tasked with solving this problem on their own because of the lack of awareness and formal recognition, have brainstormed terms they think might better describe the problem. Some examples include: Protracted Withdrawal Syndrome, Post Acute Withdrawal Syndrome, neurological damage, brain injury, Lader-Ashton Syndrome (named after UK benzodiazepine experts, Dr. Malcom Lader and Dr. Heather Ashton), neurotoxicity, benzodiazepine-induced autoimmune disease, Benzodiazepine Injury Syndrome, and Benzodiazepine Withdrawal Syndrome (BWS) — the latter being the most recognizable due to it having an existing Wikipedia entry. I think BWS is the most used alternative to the addiction narrative, but it is not optimal as it is unclear in that the term ‘withdrawal’ implies it’s short-lived. It’s also not ideal in that many patients are quite sick from benzodiazepines, due to tolerance and other adverse effects, well before they ever withdraw from them.
Nothing in either the ICD-10 or the DSM-5 seems to address the real harm that benzodiazepine patients are experiencing.
I am not proposing to know what the new language should be — it’s up for debate. I am only hoping to start the conversation both inside and outside of the community about why new language is needed. If we agree on that, the next steps could be taken to narrow down an official name for this condition that might be formally recognized. Getting a new diagnosis code is a complicated process that, from what I understand, involves petitioning the ICD-10 Coordination and Maintenance Committee (C&M) with evidence or convincing the next DSM committee. Nothing in either the ICD-10 or the DSM-5 seems to address the real harm that benzodiazepine patients are experiencing. It’s hard to pick a name now when the science is so premature in even identifying what’s occurring in patients on a biological level to cause the problems being experienced. I’m unsure if we would be successful with this route, but it’s at least worth discussing.
The burden has always been huge on benzodiazepine-harmed patients to inform their prescribers, their families, legislators, the media and the public about the problems associated with prescribed benzodiazepines — especially correcting preconceived notions. The lack of existing research leaves patients and patient activists in a frustrating dilemma. What do we call ourselves to distinguish our plight? Does it even matter what we call ourselves if the media, prescribers and legislators don’t understand it because they are so married to addiction narrative? What do we do to stop this confusion and start getting the help we need to stop this prescribed patient-injury epidemic?
JC Curle was working on her Masters in Clinical Psychology when she became disabled by taking Ativan as prescribed by her physician. She founded Benzodiazepine Information Coalition in 2016 to facilitate awareness, education, research and change.