The American Medical Association voted not long ago to classify obesity as a disease.  The intentions were good, for obesity and the associated health problems, do need attention. There are problems with this, for example if one uses only body mass index to diagnose, then an individual with heavy musculature could conceivably be diagnosed as “obese” when clearly that is not the case. Some, such as National Review, write that this is another attempt to lessen personal responsibility and allow government to enter into our lives and our bodies.

Physicians’ attempts to change what were at one time called “conditions” or “failings” or other terms into “disease” is nothing new.   You can read an excellent summary on the evolution of the term “schizophrenia” in the November 2011 Schizophrenia Bulletin.  The article quotes Berrios, “… schizophrenia research can be described as a set of research programs running in parallel, each based on different concepts of disease, mental symptom, and human mind.” For an overall critique of schizophrenia as a disease, Models of Madness is a good start. Alcohol dependency has been defined as a disease for decades. Dr. Benjamin Rush, a founding father of the United States, is credited with declaring that alcoholism is a disease. The research of E. M. Jellinek aoubt 60 years ago is credited with giving this diagnosis credence. David J. Hanson, PhD, of SUNY-Potsdam, gives a thoughtful critique of the disease model at http://www2.potsdam.edu/hansondj/Controversies/Is-Alcoholism-a-Disease.html.

Mosher et al in Models of Madness review the relationship of causal beliefs to attitudes.  While at times part of the motivation to define something as a disease is to lessen the stigma, often the reverse happens.  John Read and Nick Haslam wrote the chapter, “Public Opinion.” They cite numerous studies that find that when something is defined as a biological illness, the stigmatization increases. “A belief in categories that are discrete, immutable, and invariably rooted in a biological abnormality reflect the medical model’s essentialist view of mental disorders as ‘natural kinds’. Viewing mental disorders in this essentialist fashion is associated with prejudice along multiple pathways.  Believing in immutability may promote pessimism and avoidance. Believing in discreteness promotes the view that sufferers are categorically different, rather than sharing in our common humanity. These essentialist beliefs form a toxic ensemble.” This unintended consequence should be no surprise. It is rather common among diseases for which there actually are lab tests to diagnosis. Several members of my family, including my father, had tuberculosis. People, including family members, shied away for fear of catching the disease. Virginia mandated testing and x-rays for immediate family members (despite negative tests) from my earliest memories until about college age.  Susan Sontag wrote about cancer in Illness as Metaphor, and how there was an exception in confidentiality laws at the time for one disease due to stigma, and that was cancer. She later wrote about AIDS as well. I once visited Kalaupapa, which was a leper colony on Molokai. There were still people living there, now cured of Hansen’s disease. These folks also took you on the tour of the site. You got to hear stories about how people who were even suspected of having the illness were snatched off the street and taken here, banished from their lives, and isolated from friends, family, and home forever. Kalaupapa is a very moving place to visit. You can most likely think of other diseases with stigma, perhaps even some you fear. Based on our history as humans with a fear of disease, it is remarkable that anyone thought that defining a behavior, any behavior,  as a disease would make it less stigmatizing. In some ways, it is metaphorically throwing gasoline on a fire hoping this time a miracle will happen and the liquid will extinguish the blaze.

I think there are at least two issues at the foundation of this disease problem. And this excludes the political and economic and ego issues associated with the businesses of academia and treatment programs and medicine and pharmaceutical companies. That is a whole other thing. The first issue is thinking we know what a disease is, and that we all agree on what that means. But at the foundation of these troubles is deciding just what is a disease. That is how diagnoses got started – when we research and treat or even just talk about a condition, we need to know we are talking about the same thing. Let’s define it. Unfortunately in behavioral health, from the start egos and later egos and money were involved and muddied the good intentioned waters.  Berrios mentions the different concepts of disease above in the study of schizophrenia.  A quick web search gave me many definitions for disease, among them:

  • a disorder of structure or function in a human, animal, or plant, esp. one that produces specific signs or symptoms or that affects a specific location and is not simply a direct result of physical injury.
  • an impairment of the normal state of the living animal or plant body or one of its parts that interrupts or modifies the performance of the vital functions, is typically manifested by distinguishing signs and symptoms, and is a response to environmental factors (as malnutrition, industrial hazards, or climate), to specific infective agents (as worms, bacteria, or viruses), to inherent defects of the organism (as genetic anomalies), or to combinations of these factors
  •  A pathological condition of a part, organ, or system of an organism resulting from various causes, such as infection, genetic defect, or environmental stress, and characterized by an identifiable group of signs or symptoms.
  • A condition or tendency, as of society, regarded as abnormal and harmful.
  • Obsolete Lack of ease; trouble.

Pretty much anything out of the ordinary can be called a “disease.”  I remember folks going back 30 years who have justified the disease model in mental health and substance use by relying on the last – the obsolete – definition of dis-ease. These days, the term would be unease. So when people argue about what is a disease and whether something specific is a disease, they may be talking about very different concepts.

The second issue is, I think, with the problem of defining words and giving them great power. Steve deShazer was right, that words were originally magic.  But we use words to define words, and the definitions are circular. They have to be, and they are imperfect. The words defining an apple in the dictionary will never give you the experience of an apple.  Even experiencing one apple will not give you an idea of the taste and look and fragrance of all apples, or of the potential of apples or of the creation and life and death and return to the earth of an apple. Putting a label on an individual will not give you an experience of that individual. Being with that individual in one situation will not give you the experience of the whole ever changing person. Words have the power that we give them. We need to be careful.  I remember years ago in graduate school reading about a study in which individuals with no psychiatric problems gained admission to mental hospitals, and then just acted as themselves. Other patients caught on rather quickly that these folks were not mentally ill, but staff – not so much. The individuals took notes about their time in the hospitals, and nursing staff charted that they were exhibiting “writing behavior.”  David Rosenhan writes about the study here.

I will leave you with two quotes from Alan Watts, and also the remarkable story of Eleanor Longden in her own words.

“We seldom realize, for example, that our most private thoughts and emotions are not actually our own. For we think in terms of languages and images which we did not invent, but which were given to us by our society.”

“Trying to define yourself is like trying to bite your own teeth.”

Eleanor Longden: The voices in my head