All Suffering is Not Equal

Friday evening April 3, 2009 Elyn Saks of the University of Southern California presented the Rondeau Lecture at the Oregon Health and Science University in Portland, Oregon. As one of the attendees at that lecture, I can offer my personal observation as to its excellence and to Ms. Saks remarkable story. Elyn Saks is a remarkable individual and should be given credit for her efforts to deal with her disease.

As the auditorium emptied, I was greeted by a long-time acquaintance, a parent who lost their daughter to the effects of schizophrenia. The parent remarked to me that they hoped that not all who attended would view Ms. Saks’ story as being typical. I wholeheartedly agree.

What is particularly frustrating about schizophrenia is the manner in which the disease is diagnosed and treated. Because there is no categorization of mental illness by physical criteria, we are left to use a definition of disease by way of collection of observable and self-reported symptoms. The number of times that I have encountered people, parents and loved ones remark to me that a patient has been misdiagnosed is nauseating. It happened again at the reception prior to Ms. Saks’ presentation. I was introduced to a parent of a person who is hospitalized because of “behavioral/mental” health difficulties. The parent was convinced that the hospital was mistreating the offspring because they were treating them for the wrong disorder. What the parent could not grasp is that there is no “right” treatment for any mental illness. Sadly, treatment can only be evaluated in terms of its effectiveness, at it is far easier to fail at treatment than it is to succeed. There is also, from what I have experienced, no such thing as a “right” diagnosis. Sometimes the diagnosis is consistent over time, but often fluctuates because it is an expression of symptoms.

One of the most frustrating parts of joining the great experiment that we call psychiatry is the gradual realization of the tenuous nature of the diagnosis and treatment of the diseases. While some argue that there is no such thing as mental illness and the study of mental illness is all a scam, nothing could be further from the truth. There is remarkable compelling evidence of pathology in individuals and remarkable stories of treatment and recovery. What is damning about the field is that the history of treatment is littered with failure of treatments and little concrete certainty about anything.

Theories abound as to the causes and treatments for mental disorders but since the definition of the diseases themselves are subject to a degree of interpretation of observations, the diagnosis serves primarily as a way to communicate between those involved with the medical professions, not a mandate for a particular treatment. The invalidity of a given diagnosis is seemingly the most difficult problem facing the field of mental health today. Calling a diagnosis invalid may seem harsh but from the meaning of the term it is perhaps most correct. There is a difference between being reliable (repeatable) and valid (correct).

Ms. Saks has the same diagnosis as my daughter, schizophrenia. In her presentation, she described her treatment and medication regimen which has also been used to a degree of effectiveness with my daughter. To be precise, the exact same medications have been used in both cases, although that is no longer the case. In spite of this, my daughter is not an Oxford Scholar nor does she possess advanced degrees. She does not exhibit the same symptoms and did not react in the same manner as Ms. Saks to her psychosis. She does, however exhibit some of the same symptoms and as a result of displaying those symptoms shares Ms. Saks diagnosis. In spite of the fact that there is no certainty of the causation of either of their conditions, medical science and governments have been clamoring to install “evidence based practices” in the treatment of mental illness. If the precise nature of the illness is not yet defined, how can there be implementation of evidenced based practices to provide treatment? When the search for experimentally validated treatment includes subjects that could have different causes for the same outward symptoms how can the results of such studies have validity when treating an individual case of the disease?

Given the functional nature of disease definitions, the diagnosis of the disease of schizophrenia applies in both cases. However, I can tell from hearing Ms. Saks’ story twice and living through my daughter’s illness, I am reasonably certain that there are substantial differences as to the root causes and reactions to their disorders. Furthermore, Ms. Saks is blessed with a keen intellect and remarkable skills that few people on this planet possess. My daughter is also blessed with some skills, but not of the same type and on the same level as Ms. Saks. The brilliance exhibited by Ms. Saks has rescued her from the terrible fate that is the reality of most who suffer from schizophrenia, disability and the public mental health care system if not incarceration or lack of treatment.

While it is appropriate to celebrate Ms. Saks and hold her story as a remarkable example of what might be achieved, it is more properly respected and looked upon as an anomaly when assessing the state of psychiatric care and treatment. While we salute her efforts and courage, we hope that others do not use her example of what should be expected of others who suffer from the same diagnosis. It is also unreasonable to suggest that others who do not possess her skills would be deserving of our best efforts to provide treatment. After all, while we may be created with equal rights, we are certainly not created with equal capabilities. For some the suffering of similar symptoms will lead to far different personal circumstances. The suffering from the disease will be anything but equal.