The so-called ‘psychotically depressed’ person who tries to kill herself doesn’t do so out of quote ‘hopelessness’ or any abstract conviction that life’s assets and debits do not square. And surely not because death seems suddenly appealing. The person in whom its invisible agony reaches a certain unendurable level will kill herself the same way a trapped person will eventually jump from the window of a burning high-rise. Make no mistake about people who leap from burning windows. Their terror of falling from a great height is still just as great as it would be for you or me standing speculatively at the same window just checking out the view; i.e. the fear of falling remains a constant. The variable here is the other terror, the fire’s flames: when the flames get close enough, falling to death becomes the slightly less terrible of two terrors. It’s not desiring the fall; it’s terror of the flames. And yet nobody down on the sidewalk, looking up and yelling ‘Don’t!’ and ‘Hang on!’, can understand the jump. Not really. You’d have to have personally been trapped and felt flames to really understand a terror way beyond falling.
– excerpt from Infinite Jest,
by Pulitzer Prize winning author David Foster Wallace,
who ended his own life in 2008
Mental health care is focused on improving quality of life and reducing suicide. Yet the current system seems unwilling to examine key factors that are causing suicide— taken-as-prescribed benzodiazepine patients commit suicide at alarming rates. Like being trapped in a burning building, many benzodiazepine-harmed patients are engulfed by excruciating symptoms without any relief. This type of suffering doesn’t occur in nature; it simply doesn’t exist elsewhere. People who haven’t experienced it are unable to relate to it as the levels of torture are incomprehensible. While some lucky people experience mild or moderate symptoms, many experience a Category 5 neurological hurricane, complete with an accompanying tsunami of terror, devastating all aspects of their life. For these unlucky souls, encompassing anywhere between 20% to 80% of all patients, all five senses may be disrupted, along with a multitude of other disabling symptoms that can persist for many years. They are the poor outcomes of healthcare, the worst case scenarios, the ugly secrets. They are the silenced, with more being created each day. Given no competent medical help, they are ignored and dismissed by their providers. Their condition is so perplexing to outsiders that they often do not receive support from friends and family, who usually, over time, stop calling and forget about them. They are disabled, marginalized and discarded by society as a whole. Ironically, when they do share their experiences, they are frequently silenced and accused of “pill shaming” or stigmatizing.
They are disabled, marginalized and discarded by society as a whole. Ironically, when they do share their experiences, they are frequently silenced and accused of “pill shaming” or stigmatizing.
They become so ill that they often lose their jobs, their insurance, their savings, their retirement, their homes, their friends, their partners, their children, their hopes and their dreams. They miss weddings, graduations, births and funerals. They are denied disability benefits. They are often unable to file lawsuits seeking compensation for their numerous losses because of unfavorable laws limiting filing time and malpractice damage caps. They cannot participate in class actions because nearly all benzodiazepines are now generic, and their manufacturers are protected by the Supreme Court. With so many “flames” closing in from all angles in the “buildings” of these people’s lives, it’s no wonder that so many decide to jump.
Benzos and Suicide
Benzodiazepines have a known connection to suicide. The FDA does not require a black box warning of suicidal thoughts or behaviors, but the prescribing information for Klonopin (clonazepam), Xanax (alprazolam), Ativan (lorazepam), Tranxene (clorazepate dipotassium) and Valium (diazepam) all warn of this, with Tranxene’s plainly stating: “Antiepileptic drugs (AEDs), including Tranxene, increase the risk of suicidal thoughts or behavior in patients taking these drugs for any indication.”
A 2017 literature review found that benzodiazepines are associated with a 3-fold higher risk of suicide attempt even after adjusting for insomnia, substance use, anxiety, and mood disorder. It also found that rebound or withdrawal symptoms also may contribute to suicide risk. Similarly, a 2018 study found that veteran benzodiazepine users were more likely to attempt and complete suicide than those without benzodiazepine exposure. A 2014 study found that benzodiazepines were a key factor in physician suicides. With multiple studies linking benzodiazepines and suicide, medicine should examine methods to prevent further harm. Instead, benzodiazepine-dependent patients are currently forced to seek online help (with the rare exception who have found knowledgeable prescribers).
In April 2014, unable to get useful information about benzodiazepines from my own prescriber, I joined several online patient support groups where I put the pieces together about my own benzodiazepine harm and for taper guidance.
In April 2014, unable to get useful information about benzodiazepines from my own prescriber, I joined several online patient support groups where I put the pieces together about my own benzodiazepine harm and for taper guidance. That is where I met and exchanged messages with Ellen Kimball. Ellen was an early pioneer in radio, having worked with Larry King. She had been prescribed Klonopin initially for jetlag many years prior. She was attempting to discontinue it in her 70s and was terrified. Every interaction with her physician seemed to make her worse. With time, her messages became more and more desperate, her suffering increasing. Ellen didn’t just want to live, she begged to live—she would beg for help, for clear instruction, for the pain to stop, and for her doctor to help her. Ultimately, she begged those of us in the online benzodiazepine community to tell her story if she didn’t make it. Police welfare checks from the concerned community were called into her home several times. In July 2014, Ellen ended her life.
Ellen’s would be only one of many suicides I would encounter. Stephanie, a compassionate soul, threw herself off the Sunshine Skyway Bridge after ten months of torturous akathisia and no useful medical help. Then there was Marissa, a beautiful young mother who was more than two years from her last dose and still suffering. Or Cass, who ended her life after a year of suffering, and even made a website explaining why. And our own Brad, a brilliant chemist who served on Benzodiazepine Information Coalition’s General Advisory Board.
The suicides are so numerous that it is hard to keep track: one woman strapped herself to train tracks, a man jumped off a bridge, a gunshot to the head, another hanging, some intentional overdoses, the list goes on and on. The count is over 200 now in the almost five years since I joined the groups, and these are just the ones I can document. Having spoken to many of them, I know they didn’t want to die. They sounded just like me—unbelievably sick, wanting to get better, and planning and anticipating healthier and happier futures. Stephanie and I had even planned to go to Siesta Key together, a beach near where we both lived, to celebrate our healing.
Having spoken to many of them, I know they didn’t want to die.
I have experienced deep suicidal urges and ideations myself in this. They have a few distinct ways of presenting: The first is where suicide becomes a fantasy—the pain ends, relief comes; Next is escape—the symptoms are extremely intense and one must simply leave their own body to end the torment (this type I find the hardest, as ending the severe symptoms seems almost mandatory, like denying myself the only treatment available to me); The third is as intrusive thoughts where the mind sends repeated images of death, accompanied by fear that you will act on them; The last is as exhaustion, where I realize that much of my life has been wasted, and, should I ever recover, how much work has to be done just to return to normalcy. In the latter scenario, I just don’t care anymore—life is not working out how I hoped, I am not sure it will get better enough in the future to justify the expense of tolerating the extreme pain today, and I’d like to leave. I am glad I haven’t succumbed to these thoughts, but I’m not surprised many do. The reason I am still alive is solely due to the support of random strangers I met in the online support groups.
Preventing More Suicides
We can do better. I am urging society to help put out these fires so more people don’t have to jump. I believe the following would be a start toward reducing benzodiazepine-related suicide:
- Stop abandoning patients. When something goes wrong, denying the situation is unhelpful. Suffering patients need to be believed and listened to. The response needs to validate the harmed person’s reality, no matter how grim.
- Prescribers must become benzodiazepine literate. Medicine has failed to accurately educate about benzodiazepines. Read The Ashton Manual. Stop prescribing benzodiazepines long term for arbitrary things. Don’t prescribe without fully informed consent. Follow the prescribing guidelines of 2-4 weeks. Daily prescriptions are usually unnecessary. Most importantly, stop forcing inappropriate cessations (this includes detoxes, cold turkeys, forced tapers, and rapid tapers). Patients, if wanting to stop a benzodiazepine, should receive informed consent about the potential difficulty of withdrawal and be allowed to taper at a speed they find tolerable.
- Mental health clinicians need to become literate as well. Benzodiazepines interfere with therapy, especially CBT and exposure therapies. Benzodiazepine withdrawal is a crisis and often very limiting to the patient and their abilities. They may be experiencing extreme cognitive issues, or withdrawal-inducted agoraphobia. To be physically in your office at all is amazing. For many patients, during their taper and recovery, expecting therapeutic progress may be overly optimistic. The main goal should be to reassure the patient, reduce their anxiety, develop their coping skills, provide a safe place for them to vent their anger and fears and, most importantly, to preserve their life. Advanced therapies will likely be ineffective. A good example for how to interact with benzodiazepine harmed patients in a therapeutic setting can be learned from Baylissa Frederick, a licensed counselor, author and benzodiazepine survivor herself.
- Emergency suicide hotlines and emergency facilities need to understand benzodiazepine harm in order to prevent suicide. They are largely ignorant of the problem, and harmed patients are aware of this, creating a huge deterrent to call for help. The last thing someone who has stopped or is tapering off a benzodiazepine wants is to have their harm denied, be placed in the hospital, or put back on the harmful drug (or other drugs). Many just want a place they are supported without having to defend their reality until the wave of symptoms passes. As it stands, this doesn’t exist in most places.
- Professionals need to become of aware of the deficits in their training and call for more education, funding and research. Benzodiazepine-harmed patient advocacy organizations should be consulted before beginning the education, funding and research to ensure the topics are relevant to lived experience. Benzodiazepines also need to be made available in lower doses so patients don’t have to utilize confusing methods in order to taper at a safe rate.
- Utilize the FDA Medwatch System. Reports can be filed by anyone, including providers, patients, family members, and friends of the benzodiazepine-harmed patient. Advocacy organizations cannot help if there is no documentation— if it’s not reported, it seemingly didn’t happen.
- Don’t refer to people harmed by benzodiazepine side effects or prescribed physical dependence as addicts; it’s just not what we are and creates further dangerous problems for us.
- Friends, family and caregivers must understand this can be a medical crisis as serious as a heart attack or cancer. It can be long term and cause incredible harm. Disbelief or dismissal of your loved one by the medical field is not an excuse for you to not be helpful, in fact, it is evidence you are needed even more. This harm can last for years, and may be just as serious in year three as it was in year one. Everyone involved grows weary, but it’s much worse for the person experiencing it. I am not suggesting anyone should be forced to give up their own lives because of another’s misfortune, but little things, like a text, or an offer to run an errand, can go a long way. Remember, benzodiazepine harm can be severe, and a person may be unable to do the simplest things, like make a phone call, get a haircut, or buy groceries.
Patients will continue to die unnecessarily without these changes. How to prevent this is glaringly obvious, but requires acknowledgement and action. Forcing the harmed whose lives have been destroyed to expend their limited energy creating support groups supplementing the role of a failed medical system while also spending their time defending their experience and begging for help is killing them. We need a system that allows us space and resources to focus on our own healing.
Please contact the suicide crisis line in your area if you are feeling suicidal.
JC Curle founded Benzodiazepine Information Coalition to facilitate awareness, education, research and change.