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 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.
I on clonazepam o.5mhfor a year and a half because of a surgery I had I got severe aniexty disorder and now my clonazepam is made by a different company my pharmacy used and the new clonazepam is making me sick I took the nre clonazepam 0.5mg today 4,-25-2024 and it gave me severe toxic reaction where dirreah just came buy itself I call my doctor he did nothing I went to a hospital they said just don’t take it no more because the new company that gou/pharmacy is using now made the filler different meaning the ingredients is different I am already small I am 57 years old I have Teo son live with me I had them late and they both have special disabilities so I need to get well what do I fo because the hospital said just stop taking it and also said that I can fie and get seizures and tremors I had tremors before due to this surgery that cause this sever aniexty disorder help me stay alive somebody please help me I can only eat starch food since I was diagnosed with chronic aniexty disorder like whit rice ,white toast and white chicken thst all I est for the past 2years because of this aniexty disorder so what to do my blood pressure is up I am scared I have dirrah and no one care the hospital tell me ypu need the name brand not the generic because it makevyou sick ask your doctor to give you name brand until you can find help to get off I did he said wait until Monday but the hospital said at er you might not make until Monday please help ,I am scared to eat they go home and eat bland food the er I told them that all I eat but since this topic reation I can’t eat that because of dirrah the dr that gave me the medicine name is dr button in Louisiana state a small town he just left abd said I call you Monday what ti fo I am already feeling the pain and withdrawal
I was forced to stop klonipin cold turkey by a mental health doctor. I was on 4mg a day for 5yrs. That was in 2018. My withdrawals were severe., In 3yrs time my weight has gone from 130lbs to 101. Doctors can’t find anything wrong with me yet I continue to lose weight. I have anxiety attacks, panic attacks. I can’t sleep and my general feeling of well being is at an all time low. I’m scared because I feel like I’m dying. Should I go back on a small amount of klonipin because my brain is not resetting.
You are so correct. I have had good Drs and bad. However most of them kept me in Klonopin 2 mg and metoprolol 50 mg Prozac 20 mg gabapentin and I was doing ok . I’ve been through withdrawel and it was horrible and I didn’t k ow what was wrong with my mind. I was put in a mental hospital and they kept me off of it. I could not function right. Anyways I ended up on Klonopin again. My life with my children is not good. There all grown up I didn’t have much time with my boys. I started having panic attacks at 14 and they were horrible. I ended up with severe anxiety. I had my first son and then I got agorophobia. They put me on Klonopin and I felt great. Well 30nyears later I was on Klonopin 2 mg twice a day. They arrested me for saying I threatened my neighbors. It was not true. They put me in jail. I was supposed to get out that day are monday. I don’t remember much but severe pain, tremors,seizures and I was not put on meds and I suffered 3 months. Didn’t know where I was couldn’t communicate with people. I suffered and still do. I wish I would have done something but I could not think right. I was in there for 5 months. One time my cousin came and I didn’t know who she was. She said I was acting bizzare and shaking and pacing. I lost almost 80 lbs in that time. No one did anything. It’s been a year and a half. Covid and not having anyone with knowledge of what happened to me and benzodiazapams. I’m on 0.25 of Xanax if possibly needed. I’ve taken it. It doesn’t help and I’m still suffering. I never get out of bed. I’m always sickly. I want someone to explain what happened to me and my brain. My nervous system. It sucks having a panic disorder and anxiety and live in small town. People judge you. It sucks I’m really suffering. My back and neck muscles are all messed up. So many symptoms it’s overwhelming sometimes I am not living I’m just existing. Please have advice. I have medical insurance so it’s hard to get a good knowledgeable Dr.