After reading the January 14, 2021 New York Review of Books article by Gavin Francis -“Changing Psychiatry’s Mind”, a review of Anne Harrington’s “Mind Fixers” (which I reviewed earlier), and Nathan Filer’s “This Book Will Change Your Mind About Mental Health: A Journey into the Heartland of Psychiatry” (which I review here), I read Filer’s book and memoirs by Louise Gillett: “Surviving Schizophrenia” and “Surfacing” (both of which Filer reports on in his book). I also read Bethany Yeiser’s ” Mind Estranged: My Journey from Schizophrenia and Homelessness to Recovery.” While most of these sources cover what I have already brought forth in previous posts, there are a few ideas which these authors cover that I want to explore here.
What each of these sources explore is the essential question of diagnosis in mental illness. Particularly psychosis or schizophrenia. Both Filer and Gillett suggest that the diagnosis and labeling of schizophrenia may create a level of stigma which may be more harmful than the symptoms experienced from a mental illness itself. Filer is a psychiatric nurse in England and Gillett is a former psychiatric patient in England who details her experiences with being diagnosed and labelled as as having schizophrenia.
Another issue which is suggested by Gillett in her two memoirs is the possibility of “spontaneous recovery ” from a psychotic episode or series of episodes. I have previously discussed this with regard to “Percival’s Narrative” and Barbara O’Brien’s “Operators and Things”. Both John Percival and Barbara O’Brien claim to have recovered from their schizophrenic episodes without the influences and interventions from the psychiatric practitioners, medications and institutions. Both of them did however spend time in a psychiatric hospital and receive various treatments prior to their “recovery”. Louise Gillett also spent time in a psychiatric hospital and claims that the institution and psychiatric professionals did not “heal” her and may have even magnified her psychotic episodes by diagnosing her as having schizophrenia.
Because I have read and reviewed several other memoirs of people who have been diagnosed with schizophrenia, I found Gillett’s two books quite superficial in comparison. She does not provide much detail about her symptoms, medications, other treatments. She dwells on what she considers the principal source of her illness to be the stigma of having to bear the diagnosis of schizophrenia. It seems that the word itself carried extra weight for her. I have not found this to be true of others who have had a diagnosis of schizophrenia and written about it. Filer refers to Gillett’s books and discusses the conundrum of possibly needing some accurate diagnoses for mental illness, yet having to deal with the ongoing stigma associated with each serious diagnosis, and the fact that none of the DSM diagnoses are to be considered very accurate. Filer refers to schizophrenia as “so-called schizophrenia” and mental illness as “so-called mental illness.” Filer critiques the “enterprise” of psychiatry in the UK, particularly, though he also includes some significant material on the weaknesses of psychiatric medicine in the U.S. While he has pointed to some obvious gaps in the way psychiatric illnesses are diagnosed, he does not really offer viable alternatives. Without some well considered and monitored diagnostic system (and the history of the DSM should tell us how tenuous this is), there is little hope for a systematic series of treatment approaches.
An irony of Gillett’s almost obsessive focus on the impact of having the word “schizophrenia” as her diagnosis, is that it may further the stigma associated with the term. I have been working to de-stigmatize mental illnesses and some of that process may be to consider the current diagnostic labels as somewhat equivalent to those for most physical illnesses. Why should sharing with others that you have schizophrenia be different from sharing that you have diabetes? Both Wang and Saks, whose books I reviewed earlier, help to “normalize” the label “schizophrenia” and help us to understand how they have navigated their lives without the label or treatments defeating them. I also find Gillett’s claim of recovery without psychiatric help unconvincing. I continue to question the notion of “spontaneous recovery”, particularly without knowing the history and context of a person’s psychotic experiences from multiple perspectives – not simply from a self-report memoir.
Bethany Yeiser’s “Mind Estranged: My Journey from Schizophrenia and Homelessness to Recovery” is a more encouraging report of how determination and eventually finding the right psychiatric help and effective medications can overcome the debilitating symptoms of schizophrenia. This is a summary of her background from the “About The Author” section of her book:
“Bethany Yeiser hold’s a bachelor’s degree in molecular biology with honors from the University of Cincinnati. Prior to becoming homeless, she published three articles in biochemistry. She began full-time college at age fifteen and transferred to a well-known university on the West Coast at seventeen. Bethany spent three months living and volunteering in the slums of Nairobi, Kenya and Lagos, Nigeria during the summer of 2002. On her return, in October, 2002, she incorporated a small nonprofit organization to channel money into indigenous African medical missions.It raised several thousand dollars to build a new clinic in Nairobi, Kenya in August of 2003.
“Bethany is an accomplished violinist. She has performed in orchestras, worked for recording studios, and taught violin. Bethany was diagnosed with schizophrenia in 2007 after spending four years as a homeless person, including one year spent with only one change of clothes, and living in a churchyard. Today, she is an invited speaker at numerous conferences for physicians and health care providers who seek to learn more about schizophrenia. Bethany has studied ancient Hebrew and Mandarin Chinese.”
This is obviously a promotional piece, yet the message about her homelessness and mental illness is that it can be overcome and she can continue to have a rich and challenging life. After some years of receiving various treatments with psychotherapy and medications, Bethany was prescribed Clozaril and “by April 2008, my long-awaited miracle finally occurred and the voices were quieter. I was becoming free of the screaming chorus of children’s voices and other characters that lived in my mind for two and a half years. They have been with me nearly every minute I was awake. It was possible for me to go out in the community again and begin making friends. I went to social events with confidence, met new friends and spent time with them. I almost felt like my old self again, the way I felt during high school and during my first semester at the university. After a year on Clozaril, the voices were virtually gone. I was healthy and thin again. I had recovered.” She later states that she is not “healed” but “recovered”:
“I do not consider myself healed from schizophrenia, but I am fully recovered. I want to be a spokesperson for people desperately impaired by psychoses, and bring the good news that, today, mentally ill people can have happy and productive lives. I hope that someday, psychiatric patients will be treated with compassion like people with infections, cancer patients and people with all other diseases of the body.”
I still plan to post a separate piece on the DSM and what I might term the “diagnostic enterprise”, but I am aware of the need not to “throw out the baby with the dirty bathwater” – we need to continue to recalibrate our diagnostic processes and assumptions, while obviously excising patently wrong and harmful categories and terms. For now, schizophrenia – as fuzzy as it still seems – has no viable replacement term or diagnostic category. People have schizophrenia and we need to help them.