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.

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 andpublic 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.

Claire has a BA Hons and MA Hons from the University of Cambridge UK (MML and Social Anthropology – special interest in medical Anthropology) and an MSc in Global Politics.  She interned at the United Nations HQ, New York and was made a Robert Schuman Scholar at the European Parliament Press Office London in 2002.  Following this, she became Parliamentary Assistant to the President of the European Parliament’s Budgetary Committee, where she regularly attended the EU Disability Rights Intergroup, dealt with all media/press matters and oversaw the running of both the Brussels and Strasbourg offices.  Claire was first disabled by  the prescribed benzodiazepine medication Xanax in the year 2003, since when she started campaigning on issues faced by severe childhood trauma survivors including PTSD sufferers.  After 13 years on prescribed diazepam Claire discovered the cause of her disability and in 2016 founded the group Prescribed Harm UK in 2016, which was featured on BBC Radio 5 Live.  She also contributed to the BBC TV’s Victoria Derbyshire programme regarding SSRIs/serotonin syndrome and the Daily Mail and VolteFace regarding benzodiazepines.