Dear Media. Benzodiazepines. Our language needs to change.

After the 2001 BBC Panorama documentary “The Tranquilliser Trap” doctors came away still believing that benzodiazepines only affected patients  with “addictive personalities”.

Prescribing went down for a short time but then rose again.

Patients also come away from recent media articles still believing that because they don’t get “addictive cravings” for their prescribed benzodiazepines that they are safe. This is a false belief.

Family, friends and the medical profession still stigmatise victims as having underlying personality flaws that need addressing. The language used in articles convey a sense that the victims must have in some way brought this situation on themselves. And yet nothing could be further from the truth.

This false belief is dangerous when GPs use this assumption to justify cold turkey or rapid cessation of benzodiazepines , and when friends and family send their loved ones to rapid detox centres sometimes causing permanent brain damage.

Our disabilities are blamed on us. The Department of Health still brand us as misusers and insist services of illegal misusers are appropriate for us. A recent BMA document indicated most doctors still think even long-term Benzodiazepine prescription has therapeutic benefit. The BMA are not willing to correct this.

The general public associate addiction with thrill-seeking and reckless behaviour including deception, theft and crime. Some doctors also hold this belief.

Despite a near miss with a class action lawsuit in the 1980’s, lawyers have virtually lost interest in our cause and can suffer the same mix of predjudice, disbelief and ignorance as doctors. Only a tiny minority of victims are able to sue despite attempts to persuade prospective lawyers to take on cases. Successful legal action is very rare indeed. This is a far cry from the engaged and pro-active stance lawyers used to take decades ago.

When patients present at their GPs with a long taper plan or post taper with ongoing brain and central nervous system damage patients are disbelieved. Even patients rendered unable to walk are fobbed off with “medically unexplained symptoms” or psychiatric diagnosis and sometimes further re-drugging.

Many argue the use of the term addiction to be the reason our voices have not been heard all these years. If the focus had been on brain damage and side effects with no clinical benefit we’d arguably be in a very different place now.

Virtually no members of the general public nor doctors understand the difference between physical dependence and addiction. It is a vital difference and getting it wrong costs lives.

Most doctors believe that if their patient presents as having experienced difficulties as a result of benzos that they are a “complex case”, ( for example a patient who had unusual or complicated mental and/or physical health issues). Some seem unable to believe that in many cases those issues were a result of the benzodiazepines themselves and often years of tolerance withdrawal. It is a literally unbelievable disaster.

This is a scandal comparable to Thalidomide and yet the harm continues. We desperately need to change the way this topic is discussed.

Language Matters.

I wrote a Facebook post recently stating “harmed, not addicted.” I was referring to those of us who have been damaged by prescribed benzodiazepine medication. For me, the words “addicted” or “addiction” are potentially damaging. Most of the benzo-impacted community agreed apart from a few who yelled: “Hey, benzodiazepines are physiologically addictive and people need to know.” Sure, physiological dependence is a very important message but overall, in terms of informing others, it’s also misleading. Informed consent. People who get “addicted,” as the word is used in common parlance, to, say, cigarettes or alcohol, have knowingly taken an addictive substance into their bodies. They are informed. It’s in the general consciousness of our societies that those substances cause damage. By contrast, the vast majority of patients damaged by benzodiazepines had no idea that the chemistry of our body and brains was being chemically changed by ingesting benzodiazepines over a long period of time. We were not given informed consent, i.e. we were not informed of the potential risks of taking these substances. We trusted our doctors – doctors who we now know do not understand the chemistry of GABA receptor down-regulation. The term “addictive” leads some health professionals to erroneously conclude we have “addictive personalities.” Such judgements are not just hurtful but dangerously inaccurate. But more than that, they allow those responsible, from Hoffman la Roche to our own doctors or public health agencies, to shift the locus of blame and responsibility away from themselves and onto us. This needs to stop, and it needs to stop now. Public and Political sympathy. Benzodiazepine discontinuation syndrome is an isolating condition at the best of times. Benzodiazepines can cause family and peer group relationships to fall apart. By the time someone chooses to taper, their primary supportive relationships may have already broken down entirely. Sadly, this includes relationships with medical professionals, who in total ignorance may have misdiagnosed their patients with anything from terminal illnesses to treatment-resistant depression, or labelled them as just plain demanding. Rather than receive potentially lifesaving support with the use of the tapering techniques outlined in the so-easily accessible Ashton Manual by Professor Heather Ashton, many patients are instead de-registered, cold turkeyed or poly-drugged on other potentially harmful medications due to lack of mandatory training of prescribers on the effects of long-term benzodiazepine usage. Thus, in light of total absence of medical support or understanding, it is vital to keep social networks and thus understanding open at this time. Language does matter. Sadly, people unfamiliar with the complexities of GABA receptor down-regulation are often going to be unsympathetic to the word ‘addiction’. At a time when we are turning to our political representatives to support us where the medical profession has failed, it is even more important. Addiction is a word that implies personal choice and/or personal weakness. Clearly none of us knowingly took in a damaging substance to our body. It is noteworthy that many also prefer the word “taper” to “withdrawal.” Going through taper/withdrawal is one of the bravest things a person can do. Noted by many as being as serious as congestive heart failure or cancer, this is a condition that needs to be taken very seriously and with compassion. Coming off. Some people addicted to cigarettes, for example, can quit cold turkey. Professor Lader stated in the Documentary “The Benzodiazepine Medical Disaster” by Shane Kenny that coming off benzodiazepines was harder than coming off heroin because heroin addicts don’t die if cold turkeyed. Some benzo victims do. The term addiction is unhelpful here, too. The vast majority of us start sensibly tapering off the moment we realise the damage done. I know I did. But peer pressure to hurry up and beat “the addiction” is profoundly unhelpful. Discontinuation is long. And it needs to be. Recent studies into calcium channels in the brain prove precisely why this is so vital. The word addiction could harm those who face long-term or permanent disability due to benzodiazepines. They clearly deserve a better term than “harmed by addiction.” Many in the benzo-impacted community have suggested alternative terminology for what we are enduring, especially “central nervous system damage” and “brain damage.” These terms are truthful and perhaps convey the horror of the condition without the pejorative term “addiction.” Someone asked me by email a perfectly valid question. “Why is it taking so long to come off benzos?” I replied in simple terms: “Because coming off is extremely painful even when done slowly. Tapering too rapidly can cause death, brain damage or permanent disability.” For most, this has zero to do with emotional cravings or wanting to take them. It’s about enduring the pain of tapering off over a very protracted time with no medical support and more often than not no social support. It’s painful and it’s lonely. Victim-blaming.I for one was Miss Goodie-Two-Shoes all throughout my schooling. I resisted all peer pressure to smoke, I never touched drugs and didn’t even drink. I was a determined student doing my homework religiously every night to succeed. I know very many others, like me, never indulged in reckless behaviour prior to benzos or other prescribed medications. The shocking facts need exposing that doctors don’t actually understand what they are prescribing or their chemical effects on the human mind and body. If the media and public health bodies continue to use the term “addiction,” people who, like me, never related or identified with the term will never read the articles in the press or hear the message. The often well-intentioned journalists who do strive to lift the lid on the scale of this problem are thus missing an opportunity to save lives; they aren’t gaining the attention of the target audience. I would definitely have read an article stating “benzos are dangerous /cause long term disability.” I would never have read an article with the attention grabbing headline “addicted to prescription drugs.” I, like most people, wrongly assumed that addiction implied lack of personal control, lack of personal responsibility. Clearly we are no more responsible for our illness than the new born babies who are born into this world from mothers on dependency-causing medications. Their cries needs to be met with hugs and compassion. So do ours. After over 50 years of the facts on benzodiazepines being available, there is no excuse for our health agencies or medical professions across the world not to act to stop this pandemic. Let’s change the language used for this horrific public health disaster to get us both the policy change and compassion we need and keep the pejorative phrases reserved for the perpetrators.

I for one was Miss Goodie-Two-Shoes all throughout my schooling. I resisted all peer pressure to smoke, I never touched drugs and didn’t even drink. I was a determined student doing my homework religiously every night to succeed. I know very many others, like me, never indulged in reckless behaviour prior to benzos or other prescribed medications.  The shocking facts need exposing that doctors don’t actually understand what they are prescribing or their chemical effects on the human mind and body. If the media and public health bodies continue to use the term “addiction,” people who, like me, never related or identified with the term will never read the articles in the press or hear the message. The often well-intentioned journalists who do strive to lift the lid on the scale of this problem are thus missing an opportunity to save lives; they aren’t gaining the attention of the target audience. I would definitely have read an article stating “benzos are dangerous /cause long term disability.”  I would never have read an article with the attention grabbing headline “addicted to prescription drugs.”  I, like most people, wrongly assumed that addiction implied lack of personal control, lack of personal responsibility. Clearly we are no more responsible for our illness than the new born babies who are born into this world from mothers on dependency-causing medications. Their cries needs to be met with hugs and compassion. So do ours.

After over 50 years of the facts on benzodiazepines being available, there is no excuse for our health agencies or medical professions across the world not to act to stop this pandemic. Let’s change the language used for this horrific public health disaster to get us both the policy change and compassion we need and keep the pejorative phrases reserved for the perpetrators.

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2 thoughts on “Dear Media. Benzodiazepines. Our language needs to change.

  1. I agree entirely that the word “addiction” being used for those of us unfortunate enough to have been made dependent from the “prescribed use only” of benzodiazepines is ludicrous. I feel a groundswell happening.

    Liked by 1 person

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