Illustration: Jon Han
Many psychiatric treatments are iatrogenic, meaning the treatment itself creates new disordered symptoms. Unfortunately, not all physicians are familiar with all side effects of these drugs. This is partially because pharmaceutical companies don’t expose all side effects, unless they have to, or at times, because FDA does not feel it is necessary to publicize all side effects. Generally speaking, because there is a great interest to make sure people stay on their drugs, and do not abruptly stop them, only selective information is publicized.
The people who suffer from mental illness are rarely believed. In fact, we are told, that most people suffering from severe psychiatric illness suffer from anosognosia. Anosognosia, also called “lack of insight,” is a characteristic attributed to patients who oppose the psychiatric diagnosis and treatment given to them, because they do not believe they are suffering from a medical problem.
“The mentally ill themselves are rarely asked and taken seriously about the way they are treated. The main objective has always been controlling the aberrant behavior and protecting the “normal” people from any discomfort or “danger” that the “abnormal” may present. In fact, the mentally ill are regularly dismissed as unreliable to make a judgment about their treatment or for that matter, anything else in life. Yet, the subjective experience is what can help or hurt these vulnerable souls and determine the outcome of their treatment. Their subjective experience rarely matches the assessment of their psychiatrists. In a study conducted by Karow et al, the researchers compared “symptomatic remission” as viewed by patientsagainst the perception of their family members and psychiatrists.Their assessment showed that the patients’ priority was on their “subjective well being.” Moreover, only 18% of patients, relatives and psychiatrists “agreed in their assessments” of the outcomes. There is clearly a wide gap between the understanding of remission as perceived by the “experts” in contrast to the subjective assessment of the individual.”
Severe mental distress, especially in the form of psychosis, and deeply felt expressions of inner conflicts are uniquely personal in nature. Arthur Kleinman cautions the clinical researchers about evaluating suffering, noting that “it can only emerge from an entirely different way of obtaining valid information from illness narratives. Ethnography, biography, history, psychotherapy—these are the appropriate research methods to create knowledge about the personal world of suffering.” These methods provide an opportunity to transcend reductionist psychiatric “symptoms” and to grasp the “complex inner language of hurt, desperation, and moral pain” of the experience. It is the “reality” as experienced by those journeying into madness—not a “reality” imposed by others unto them—that matters most. Thus, it is instructive to listen to their voices.
There are individuals who are helped by their psychiatric treatments and feel their medication has helped them tremendously. In fact, there are those who feel their psychiatric drugs have saved their lives. And then there are those who have been severely damaged, at times fatally, by their medication. All medications have side effects and taking them is a personal choice based on cost/benefit analysis. No one should be judged or condemned based on their decision to go one way or the other. However, it is essential that patients are well informed about the side effects of their drugs before they choose to take any.
Many patients on strong psychiatric drugs never experience stability and their adverse symptoms of their treatments overshadow any benefit that they may get. It is important to understand why so many psychiatric patients refuse to take their drugs. If these drugs are meant to really help them, why would they not want to be “helped”? Of course, some buy into the argument that these people don’t have any true insight into how sick they are. I personally don’t believe in that! These individuals suffer intensely from their mental tribulations. I would think that they would want to take any treatment that would minimize their suffering. Maybe some other forces are at work!
Traditionally, patients have fought against being medicated, because they “desire to be in complete control of their lives.” Many stop their medication due to a plethora of unpleasant subjective effects. Speaking of these effects, researchers have emphasized:
[T]he sedative, extrapyramidal, or other physiologic effects of antipsychotic drugs can precipate panic reactions, further psychotic deterioration, and increased somatization. Extrapyramidal symptoms…are often subjectively very stressful and may be incompatible with clinical improvement.
One of the most awful side effects of psychiatric drugs, particularly antipsychotics, and some Selective Serotonin Reuptake Inhibitors (SSRI), is akathisia. This is an illness of restlessness, and it feels like hell! Unfortunately, this side effect is very persistent and will not go away easily, even after people stop the medication. Many of those treated with these drugs “complain that their treatment makes them “jittery-like,” feeling “worse,” and having “unbearable fatigue.” One complained, “I want my own personality,” while another one said, “It makes my eyes flip to the top of my head.” The patients seem to dread akathisia—an anxious restlessness—more than any other side effects that they have to endure. This effect is “entirely subjective,” and prevents the person from performing any task or even resting. Theodore Van Putten citing other researchers states that the subjective experience of akathisia can be “more difficult to endure than any of the symptoms for which (the patient) was originally treated.” This effect which has been referred to as “syndrome of impatience,” is often associated with “severe anxiety,” “peculiar bodily sensations,” and “bizarre mentation.” Highlighting this paralyzing side-effect of antipsychotics, Van Putten says, “A moderate akathisia can preclude sitting through the dinner hour or a movie—let alone a sedentary job.””
The following are tragic cases of akathisia briefly explained here:
Joe Schiel was experiencing heightened levels of anxiety and stress as he was approaching his retirement. He was put on a generic version of Lexapro to address his anxiety as was transitioning to a new stage of his life. Nearly a month later, he jumped off a hotel’s fourth-floor balcony.
Stewart Dolin started taking paroxetine, a generic version of the SSRI Paxil, following the stress of increased responsibilities at his job. Just six days later, he leaped in front of a moving train.
David Healy, renown British psychiatrist says, “I’ve seen cases where someone starts the medication, and 24 to 48 hours later, they die a violent death.”
Both Sciel’s and Dolin’s cases were identified as suffering from Akathisia, a side effect that caught their physicians and both families by surprise. There is no conclusive data or expert consensus on the exact cause of akathisia and the rate of deaths from its complications. Experts say that due to the lack of scientific data physicians often don’t discuss the risks with patients. It is not clear how many prescribers are even aware of these risks. No wonder, so many families like Schiels and Dolins are blindsided.
We should demand more from our psychiatric providers. This lack of transparency from Pharma cannot continue!
 A. Karow et al., “Remission as Perceived by People with Schizophrenia, Family Members and Psychiatrists,” European Psychiatry 27, no. 6 (8, 2012), 426.
 Elahe Hessamfar, In The Fellowship of His Suffering, (Eugene, OR: Cascade Books, 2014), 132
 Arthur Kleinman, The Illness Narratives: Suffering, Healing, and the Human Condition, (New York: Basic, 1988), 28-29
 Theodore Van Putten, “Why do Schizophrenic Patients Refuse to Take their Drugs?” Archives of General Psychiatry 31, no. 1 (July 1, 1974), 68.
 Ibid, 70.
 Ibid, 71.
 This whole section has been taken from my book, In the Fellowship of Suffering, p.138.