In Memoriam: The Psychiatric Legacy of a Prosumer

August 1, 2018
H. Steven Moffic, MD

In psychiatry, a “prosumer” is a mental health professional who has personally experienced mental illness. The prosumer can self-disclose that connection or not-Frederick Frese, PhD self-disclosed often, loudly, and clearly.

In psychiatry, a “prosumer” is a mental health professional who has personally experienced mental illness. The prosumer can self-disclose that connection or not-Frederick Frese, PhD self-disclosed often, loudly, and clearly.1

Most prosumers however, do not proclaim themselves, whether from stigma, fear of reprisal, and/or lack of confidence. At times, these can be realistic concerns, as conveyed by the psychologist Kay Jamison in her landmark memoir.2 She revealed her bipolar disorder to a friend and colleague, only to suffer an immediate drop in status. And yet, paradoxically, over time and with the publication of other books, she has become more famous than infamous.

About a decade ago, Dr. Frese wrote a scholarly article about the ambivalence of prosumers.3 For those who had a diagnosis and treated were for schizophrenia, the views on self-disclosure varied widely. In Frese’s article and in a profile in the Cleveland Plain Dealer4 Dr Frese told of his own heroic journey. All of his ensuing life lessons are from the article in the Cleveland paper.

After multiple hospitalizations over 10 years during his early adulthood, he gradually recovered enough to be successful in work and life, the Freudian milestones of a “normal” life. He gave much credit to his treatment, especially the long-term use of medications.

Life Lesson #1: “If they hadn’t come up with that medication, I’d still be hospitalized.”

Professionally, Frese started working with the mentally ill in prison, he then went on to obtain a doctorate in psychology. Despite having very brief relapses in his thinking processes, he maintained long-term leadership positions in a variety of mental health care systems. He, along with loved ones and colleagues, knew that if he withdrew briefly, he could prevent the symptoms from worsening.

Life Lesson #2: Hey-heh, we schizophrenics aren’t all useless after all.”

Becoming certain that his illness and education realistically gave him a better understanding of people with schizophrenia, and that he could be a role model, he travelled nationwide, giving thousands of speeches, testifying at congressional hearings, and often appearing on television. Perhaps one reason he was so successful is that he used humor to disarm his audience. He made self-deprecating comedic remarks that were laced with deep insight, such as calling himself a “stand-up schizophrenic.”

Dr Frese was one of the few non-psychiatrists to actively participate in a list-serve discussion group of the American Association of Community Psychiatrists. We learned so much from him, including to not use stigmatizing words such as “bonkers,” “crazy,” “lunatic,” “nut,” and “wacko,” as well as diagnostic terms such as “insane,” “psycho,” and “schizo.”5 (I’m still working on having my grandchildren not use the word “crazy” in any context.)

Learning of his death, my colleagues remembered him as “an incredible role model for all,” “a true champion of recovery,” and “a refutation to so many false beliefs about mental illness.”

Life Lesson #3: “The professionals shouldn’t assume the patient is ashamed of the illness.”

He seemed just as successful in his personal life as his professional life. He had a long-term marriage to Penny and they had four children.

Life Lesson #4: “I was so in love with him and still am.”

So many who have known him have also been in love with him and what he stood for. He died at the age of 77 on July 16, 2018. We can honor him best by learning and teaching his many life lessons.

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Disclosures:

Dr Moffic is an editorial board member and regular contributor to Psychiatric Times. Before he retired from clinical work for the underserved population, he was a tenured Professor at the Medical College of Wisconsin.

References:

1. Lefley H. “Prosumers” and recovery. Letters, Psychiatric Services, published online, 1 Dec 2013. https://doi.org/10.1176/appi.ps.201300382. Accessed August 1, 2018.

2. Jamison K. An Unquiet Mind. New York: Vintage; 1996.

3. Frese F, Knight E, Saks E. Recovery from schizophrenia: with views of psychiatrists, psychologists, and others diagnosed with this disorder. Schizophr Bull. 2009;35:370-380.

4. Henry F. Schizophrenia could take Fred Frese far away, but it also gives him a niche in life. The Cleveland Plain Dealer. 2009. http://blog.cleveland.com/pdextra/2009/12/schizophrenia_could_take_fred.html. Accessed August 1, 2018.

5. Frese F. MH professionals need to watch their tongue. Psychiat News. May 2007. https://doi.org/10.1176/pn.42.10.0017a. Accessed August 1, 2018.