The United States spends more money on healthcare than any other developed nation in the world. Yet, we have experienced an observable and exponential rise in poor mental health outcomes, disability rates, and suicide over the past several decades.
Robert Whitaker’s Anatomy of An Epidemic provides the world with alarming statistics that cannot be ignored. The rise in the number of disabled mentally ill has been especially pronounced since 1987, the year that Prozac, the first of the “second-generation” psychiatric drugs, hit the market. The number of adults on SSI or SSDI due to mental illness has risen from 1.25 million in 1987 to more than 4 million today.
I felt fortunate that I had the means to see a psychiatrist when I was 17. After my psychiatrist tapered me rapidly off Klonopin in approximately a week, my perceived luck had quickly transformed into complete and utter despair. I spent the next 15 years trying to find answers for the life-altering and persistent symptoms that I continue to experience to this present day.
My full story of iatrogenic injury can be accessed here.
The theologian Ivan Illich put iatrogenesis at the centerpiece of his ideology. He described clinical iatrogenesis as the injury done to patients by ineffective, toxic, and unsafe treatments. He described the need for evidence-based medicine two decades before the term was coined.
I could have never anticipated the life that I was about to be thrown into. When a person starts to drown, there are desperate attempts to maintain their survival and offer first aid. There are protocols including life rafts, rescue maneuvers, and CPR. All I could do was try to keep my head barely above water.
I do not know how I survived what I believe to be the most inhumane moments of my life, and I fully acknowledge that many who were iatrogenically injured by psychotropic drugs did not. When I thought I had achieved some stability from my condition, I began to experience complete abandonment from most psychiatric practices that I contacted.
Due to the support and knowledge from the layperson survivor community, I was able to finally discover a treatment protocol that could help me in my recovery process. Yet, it began to seem utterly impossible that any psychiatrist would be willing to take me on as a patient.
As a compliant and “conventional” patient, I was met with open arms by any provider. If I complied with their protocol, I would receive praise and empathy. However, on the occasion that I offered my own conjectures and insights after my many years of lived experience as a harmed patient, I was met with resistance and denial.
I frequently felt I had to prove my injury so ferociously that I started to consciously identify myself as if I were a plaintiff in an ill-fated court room trial. The odds seemed to always be stacked against me. Any solid evidence I provided to these physicians was immediately overturned. I felt completely powerless against the authoritative stance I was met with each step of the way. I was met with many of the following statements, questions, and invalidation from various practitioners of psychiatry:
- “Your case is too unconventional and complex for our practice.”
- “I have never prescribed clorazepate. Therefore, I am not amenable to your treatment protocol.”
- “Why are you taking liquid gabapentin and not capsules? We cannot provide you with what you are asking for. We cannot see you as a patient.”
- “We are not a practice that treats neuralgia or physical pain. We cannot prescribe gabapentin for your continued taper.”
- “I have never experienced another patient experiencing the symptoms you are describing.”
- “We do not treat benzodiazepine withdrawal here. Please refer to the following detox clinics listed below in this email.”
- “All the information you are reading in the benzodiazepine support communities is wrong and these groups exhibit cult-like behavior. Your withdrawal symptoms are psychosomatic in nature and evidence of underlying anxiety.”
Underground Support Communities
The support forum SurvivingAntidepressants.org received over 749,903 hits this past December. Founded over a decade ago by Adele Framer, it continues to thrive as one of the most popular support communities in the psychiatric survivor population.
The users of this support community are typically individuals who have been severely injured by psychotropic medication. They have typically seen several psychiatrists who have all denied their claims of injury from the medication and/or fired them as patients. Desperate to find answers, they rely on this website in order to look for advice on how to safely discontinue their psychiatric medications.
SurvivingAntidepressants.org provides volunteer support for psychiatric drug withdrawal while taking a harm reduction approach. It offers the following statement: “Gradually tapering off of a medication is the only known way to reduce the risk of post-acute withdrawal syndrome (PAWS).” The members on the site can fully attest to experiencing long-term symptoms, even years after the cessation of their psychotropic drug.
The founder of SurvivingAntidepressants.org recently authored a publication entitled, “What I have learnt from helping thousands of people taper off antidepressants and other psychotropic medications.” In this paper, the author describes prescriber failure to recognize, monitor, and address withdrawal symptoms as the main impetus for almost all the site membership.
In their attempts to go off the drugs, almost all patients have been sold a narrative that they have relapsed to their original condition, even many who suffered brain zaps, one of the main hallmark symptoms of withdrawal, and especially those who have had mysterious symptoms for years, consistent with psychotropic PWS. Users frequently turn to the Internet because they question this diagnosis.
The support site benzowarrior.com aims to raise awareness and provide information about benzodiazepines, side effects, iatrogenic dependence, withdrawal, and recovery. This community provides loving and healthy support to those harmed by benzodiazepines from around the world as they take charge of their health and withdraw from these medications. This group is grounded upon the development and practice of healthy coping skills to assist individuals on their journey.
Figures listed in the estimates of patients experiencing withdrawal on the main information page of the Benzodiazepine Information Coalition highlight the magnitude of those suffering from benzodiazepine withdrawal syndrome. A study by Reconnexion, a nonprofit organization in Australia offering counseling and support for benzodiazepine dependent patients, estimates that between 50-80% of people who have taken benzodiazepines continuously for six months or longer will experience withdrawal symptoms when reducing the dose.
A slow-growing minority of psychiatrists recognize the harm that psychotropic medications have caused patients. They are extremely rare to find, and it took me a great deal of persistence to encounter these medical professionals.
During my time as an administrator for Benzo Warrior Community, one of the largest Benzodiazepine support groups on Facebook, I frequently saw members inquire about practitioners who could potentially help them during their withdrawal from benzodiazepine medications. It is difficult, if not impossible, to find these types of practitioners. This is the harsh reality we face daily as psychiatric survivors.
Why Are We Being Abandoned as Patients?
By the time an individual realizes that their drug is the main cause for their unexplained symptoms, their situation has become extreme and even dire. It is not uncommon for those who have become iatrogenically injured by psychotropics to have lost their jobs, homes, families, physical health, and their desire to keep living.
When faced with an injured patient, psychiatrists often do not seem to fundamentally understand the true complexity of psychiatric medication withdrawal. They also see injured patients as a liability, individuals which may present them with further problems down the line. Furthermore, they may see injured patients as a threat to their profession: if they are to admit that psychiatric medications can and do cause harm, what would that mean for the future of their careers?
This phenomenon seems quite removed from other medical specialties. If a patient had a faulty pacemaker, it seems more than likely that a cardiologist would treat this as a serious condition. Yet, we do not see the same level of concern when patients discuss their severe and even life-threatening symptoms to their psychiatrists. They are often met with explanations that their symptoms are due to an underlying pathology and frequently prescribed further medications. When patients ask their psychiatrists about safe and effective tapering methods, they are often met with little to no guidance or referred to detox clinics.
Why are we, as patients of prescribed harm, abandoned by psychiatry? If I suffered oxygen loss and became brain-injured during a routine surgery, I would be met with compensation, sympathy, and a genuine apology. It is unfathomable that anyone would question my symptoms. As an individual who suffered grave harm from prescribed medication, I must suffer the additional burden of receiving inadequate care or, even worse, no care at all. This has become an all too commonplace and acceptable practice by conventional psychiatry.
Once a patient has been given a mental health diagnosis, their experiences are easily manipulated so they will be considered subjective and biased. Harmed patients are frequently unable to control the narrative of their own treatment and are subject to gaslighting, dangerous medical advice, and termination.
Psychiatrists on social media platforms have claimed that harmed victims are “anti-psychiatry” and just aren’t trying hard enough to find practitioners to help them. They often bully those injured by medications on these platforms and publicly deny the extent of the suffering that psychotropic medications have caused to the global population. At present, they continue to denigrate the lived experience of harmed victims.
The Experts Speak Out
In his book, Saving Normal: An Insider’s Revolt against Out-of-Control Psychiatric Diagnosis, DSM-5, Big Pharma, and the Medicalization of Ordinary Life, Allen Frances, former chair of the Duke Department of Psychiatry as well as former chair of the DSM-IV task force, cautions that the “newest edition of the ‘bible of psychiatry,’ the Diagnostic and Statistical Manual of Mental Disorders-5 (DSM-5), is turning our current diagnostic inflation into hyperinflation by converting millions of ‘normal’ people into ‘mental patients.’”
It is my sincere hope that such a text will continue to influence practitioners of psychiatry to find a different perspective. If we are to contextualize this further, becoming injured by psychiatric medication may result in losing our ability to feel normal for the rest of their lives.
Patients endure days, months, and years of exponential tapers, delayed neurotoxicity, and protracted withdrawal symptoms. If they are lucky enough to recover, they are then faced with processing the trauma of their experiences and grieving precious time they have now lost. The years during which an individual may have had their humanity trapped somewhere in the intersection of reality and a dark underworld of unrelenting symptomatology. There have been relationships dismantled, identities shattered, and emotions oscillating between periods of disassociation and extremity during and after the cessation of psychotropic medication.
Furthermore, what is to be said about the lost abilities to experience genuine connection, love, and intimacy? Selective serotonin reuptake inhibitors (SSRIs) may cause sexual side effects such as anorgasmia, erectile dysfunction, and diminished libido. Changes in mood such as “emotional blunting” could also serve as a potential catalyst for sexual side effects. These changes may never return to baseline in some patients.
While the initial statistical data concluded that this occurred in only 10% patients, this was a figure based on unprompted reporting, and thus underestimated. In more recent studies, when doctors specifically asked their patients about sexual difficulties, 83% of participants reported experiencing sexual dysfunction. Despite solid evidence from both patient accounts and science, doctors frequently dismiss the very legitimate possibility of Post-SSRI Sexual Dysfunction (PSSD).
In the United Kingdom, 7.3 million (17% of their adult population) are taking one or more antidepressant medications. The publicly funded healthcare system in the U.K. is the National Health Service (NHS). While the NHS does provide non-psychiatric patients with high-quality healthcare, they are also experiencing an alarming trend of psychiatric patients who are becoming injured and unable to find doctors that can help them safely stop their psychotropic medications.
This trend has taken a toll on physicians as well. Dr. Peter Gordon was an acclaimed psychiatrist at St. John’s Hospital in West Lothian, Scotland. Dr. Gordon suffered devastating side effects when attempting to stop taking his antidepressant medication, Seroxat (paroxetine). His story was featured in the Daily Mail.
Dr. Gordon stated, “Like millions of Britons who’ve taken prescribed antidepressants, when I tried to stop taking the pills, I suffered serious psychiatric symptoms. In fact, I felt so suicidal that I had to be admitted to hospital.” He went on to describe a complete dismissal by his colleagues after his experience, “You’d think that my colleagues would be generally sympathetic. However, I have been marginalized, ignored and vilified as a troublemaker – and a leading member of the RCPsych even wrote to my employer questioning my sanity.”
A review by the All-Party Parliamentary Group for Prescribed Drug Dependence suggested that around four million people in England may experience sleep problems, anxiety, and hallucinations when withdrawing from antidepressants. For approximately 1.8 million people, these symptoms could be severe. If even acclaimed psychiatrists such as Dr. Peter Gordon are abandoned when seeking help, how can we as patients remain optimistic for change?
Deprescribing Clinics: An Urgent Call to Action
One psychiatrist is devoting his time and expertise to changing the current narrative about deprescribing techniques in psychiatry. Dr. Mark Horowitz is a training psychiatrist with a Ph.D. on the neurobiology of depression and the pharmacology of antidepressants from King’s College in London. He co-authored an article entitled “The ‘patient voice’: patients who experience antidepressant withdrawal symptoms are often dismissed, or misdiagnosed with relapse, or a new medical condition.”
The themes identified in the publication included a lack of information given to patients about the risk of antidepressant withdrawal; doctors failing to recognize the symptoms of withdrawal; doctors being poorly informed about the best method of tapering prescribed medications; patients being diagnosed with relapse of the underlying condition or medical illnesses other than withdrawal; patients seeking advice outside of mainstream healthcare, including from online forums; and significant effects on functioning for those experiencing withdrawal.
This article highlights a ubiquitous theme amongst patients: the consistent lack of support during psychiatric medication withdrawal. One way to remedy this urgent need would be to institute a nationwide service that would specialize in withdrawal services for prescribed medications. Deprescribing clinics represent a global health necessity, as these services will improve quality outcomes for harmed individuals and potentially save the many lives lost to suicide during psychiatric medication withdrawal. Finally, the mere presence of these clinics will forcibly shift antiquated perspectives within conventional psychiatry.
You May Say that I’m a Dreamer, but I’m Not the Only One
Many doctors claim that the current prescribing and deprescribing protocols are successful for most service users. Let’s not skew reality. Are the current trends within psychotropic prescribing conducive to positive outcomes? My definitive answer would be a no.
We are witnessing an observable and exponential rise in the number of patients pleading for help from strangers in online support communities. Abandoned by psychiatry, these patients now feel heard by other group members who have or are currently experiencing the same plight. Many volunteer moderators and administrators in these groups provide excellent resources that include scientifically validated protocols, including the exponential tapering of psychiatric medications.
It is currently estimated that the number of individuals seeking aid for their psychiatric medication withdrawal online numbers in the hundreds of thousands. That figure is just the tip of the iceberg, considering it takes many patients decades or longer to realize that their medication is the source of their problems. A significant portion of patients have become so indoctrinated into believing that their adverse symptoms are part of an underlying pathology, they may abandon their efforts in seeking the truth.
Many individuals in the support communities are also active on twitter, using the hashtag #prescribedharm to indicate their status as a prescribed harm victim. These individuals frequently describe their experiences on that public platform in order to raise awareness for others. There also exists a subset of groups in the #prescribedharm community that bring attention to severe and persistent conditions. A few examples include the Akathisia Alliance for Education and Research, MISSD (Medication Induced Suicide Prevention and Education Foundation in Memory of Stewart Dolin), and PSSD is Real.
I remain cautiously optimistic for change within the field of psychiatry. I am fearful about the prospect of future populations that may become harmed by psychiatric medications. Like many, they would later be faced with the absence of real support from the medical community.
I implore all psychiatrists to listen with intent when evaluating their patients. An iatrogenically harmed patient may present as defensive, but please remember, they have likely suffered years of suffering, chronic invalidation, and isolation. Many of us began taking psychotropics with little to no informed consent about the consequences or mechanisms by which these drugs could destroy our livelihoods. We need your help and willingness to recognize harm reduction approaches in coming off psychiatric medications. Haven’t we already been harmed enough?
Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.