That’s my cry. Believe us. I want people to listen to and understand benzodiazepine withdrawal sufferers when they ask to be heard.
I am now a number of years post cessation yet I have still sharp memories of my excruciating Klonopin withdrawal experience. When we beg family and friends to listen to us, to hear what we know, to listen to our accounts of an unending visit to hell, to listen to our pleas to somehow return to us our lost lives and selves, please believe us. Understand that you and I and nobody on earth were meant to experience this pharmaceutical nightmare.
It might be asking too much to expect empathy. Unless you’ve gone through benzo withdrawal, you know nothing like it — this unnatural torment sent from hell and the the darkest, coldest, most cruel corners of the universe. Though I’ll add — if you have had a difficult time with other psychotropics, then, yes, you likely have more than a clue. Or, if you have been prone to experimenting with hallucinogenics and had a bad LSD trip that consumed your consciousness for days or weeks afterward, you might have an inkling. Sorry to learn this, but I’ll take your empathy gladly and gratefully.
it has been over sixty years since the arrival of Librium. Consider that it has been over fifty years knowing that Librium’s stronger, more devious sibling Valium was marketed to the masses. Despite a growing awareness of the dangers, benzos are still being prescribed as a long-term solution to anxiety and insomnia and more — seizure disorders, concussions, infections, pain, tics, rashes— the list is long. And very disturbing. Off to the pharmacy you go, to address discomforts that doctors hither and yon decide is worth the risk a benzo pill poses. Most physicians know that benzos have hazards. But prescribers are eternally excusing themselves, preferring to provide a quick fix and short-term reprieve to their trusting patients, too often dooming them to a long sentence in benzo hell.
Do people think we are lying? To what end? For attention? What comes of that? What do we gain? Just a lower opinion of our already crumbling self-esteem. You know the expression “you can’t make this shit up?” It applies. Why would anybody want to feel this way or want people to think that they do? There’s absolutely nothing to be gained.
So, you see, this is what I’m imploring you to do: Believe us. Because things need to change. Let’s start with the prescribers. We need doctors to stop prescribing benzos long-term and to protect those who are already on them. Dear Doctors: Never, ever force a patient to stop abruptly. Leave it to the patient to decide when to come off. Provide your patients with informed advice and help them taper safely. For personal crises, such as mourning after a death, go ahead and provide a prescription for 1 week. Keep in mind: those prescriptions can lead to PRN prescriptions. A risky proposition. PRN intake cast many of us into the abyss of benzo tolerance and withdrawal. Make sure to direct your patient not to take more than 1 or 2/month with additional weeks in between doses taken. A radical idea? If you know benzo hell, you know that this is the advice many of the iatrogenically harmed wish had been given before our doctors told us not to worry, told us we’re not abusing them, told us they’re safe, blah blah blah. And, Doctors, check on your patients. Learn the signs of interdose withdrawal. Learn when a patient has reached tolerance and then learn how to guide them off safely. If they so choose. Because nobody should be forced off. You started it. You prescribed them into this nightmare. This is no ordinary drug cessation. Make sure they have the prescriptions they need to do a safe patient-guided, symptom-based taper. Make sure their math has been worked out because, for most, even simple math is elusive during withdrawal. Understand that they are living in a hell that you or a colleague created. Take responsibility.
Also, initiate research into studies that ask why benzodiazepines damage some of us badly yet leave others well and unharmed. As many as 50% experience adverse effects. And 50% seem to do fine with minimal or no problems. Do not discount the population that suffers serious damage; a percentage within that group (as high as 20%) continue to experience frightening symptoms and life-changing disability years beyond benzodiazepine cessation.
I do not want to lose sight of ordinary life suffering. I honor that. Panic attacks and incessant insomnia are disruptive, and I cannot blame anyone for seeking remedy in a prescribed medication. In fact, some do well on benzodiazepines. I do not want to deny that. We all want healthy minds and bodies. I am just advocating for what I see as a better way. You see, I would like to see everyone protected from potential harm. I would also like to see everyone heal from their suffering — whatever the nature or cause.
Trust me, in many ways I am still a mess. Life is not easy. I meditate daily and continue to work on my vulnerable systemic health with a focus on what the earth provides. Fresh foods, herbs and botanicals. Fresh air and sunshine. Brisk long walks in the woods with my dog. In the coming year or two, I hope to continue venturing out not only into a post-Covid world, but a fully-lived post-benzo world.
I am heading out shortly. On my way to a favorite trail, I’ll be popping my ballot in a mailbox. How strange these days continue to be. Though, for me, I adjusted to the isolated life during my taper. How strange that Covid has given to the benzo-injured easier access to voting. Agoraphobia, akathisia, the inability to drive or even walk, the impossibility of waiting in line, entering a building, and managing the mechanics of voting — a horrid thought for the benzo unlucky. But this year, the voting system is working in our favor; our ballots arrive in the mail. Hope you have yours.
Here’s mine.
Please vote.
(If you need help getting your ballot in, let us know at hellogobbo@gmail.com and we’ll try to find someone in your area to help.)
Next blog coming soon. Filming During Covid: As Prescribed’s Epilog Shoots