The goal of this series of articles is to diminish the stigma of mental illness through sorting out fact from myth.
Carrie's Aunt Martha died of colon cancer in 1972. She remembers hearing a story around that time about an incident Martha had at work. Martha was a secretary for an insurance company. She was intelligent, level headed and fun all at the same time — an admirable combination.
Following Martha's first round of surgery she returned to the office and to what she hoped would be the comfort and support of her colleagues. Going out to lunch was something they had often done together, but for some reason Martha was no longer invited. Back then there was a lingering fear of cancer being contagious.
Carrie's aunt was the victim of prejudice and stigma born of societal fear. Fear of the unknown wasn't new in the 1970's, nor is it unheard of in 2015. Nevertheless, the term for cancer hasn't changed in decades. We may have a better understanding of the various types, but the descriptive title for cells gone awry remains "cancer."
Disorders of the mind also have a troubling past in terms of public perception. A trip back in time demonstrates the attempts of scientists to clarify mood and thought disorders in an effort to organize treatments. The terms used by scientists and health professionals have frequently become distorted and misused by the general public to mock what isn't easily understood. Some examples of words historically used include lunacy, idiocy, insanity and madness.
In annoyance or anger many of us have said things such as, "Are you crazy?" "Are you a lunatic?" If someone was fatigued to the point of being unable to function we wouldn't say, "Are you cancer?"
It is telling that questions beginning with, "Are you ..." combine a person with a symptom or illness rather than viewing someone as experiencing a symptom or illness. "He's schizophrenic," or "He's bipolar," are examples of establishing the person as a disorder.
It wasn't until 1812 when Benjamin Rush published "Medical Inquiries and Observations upon Diseases of the Mind" that the idea of thought and mood disorders being linked to physiological underpinnings became available to American readers. While some people find it useful to have a word or phrase to explain their experience, there are also people who believe they have been mislabeled. The labeling sometimes changes the perception of others toward them and doesn't adequately address their experience. Our understanding is that this is especially true of those who view themselves as having been labeled following the experience of trauma.
There have been a string of terms used over the past several years in an attempt to better describe disorders of the mind while diminishing stigma on the road to eliminating it. Such phrases include behavior disorders, mood and thought disorders, psychiatric illness, mental illness, behavioral health, mental health and mental wellness. These are the phrases serving as umbrellas to the lists of specific words or phrases used to describe diagnoses in the Diagnostic and Statistical Manual 5.
The DSM 5 terms cover a wide array of symptoms whose basis for existence often is not concretely understood, allowing stigma to remain in effect. The terminology doesn't change the suffering, but it can add or diminish stigma and shame depending on how each term is used.
How can we restore dignity to those who experience symptoms? What phrases will more accurately describe these experiences and conditions? What is the terminology which will allow the public to look with compassion as we would do with any other illness or experience causing suffering?
Or is the quest for non-stigmatizing language the wrong way to go? Cancer is still "cancer" and "AIDS" is still "AIDS" and both have gone from highly stigmatizing to much less so without relabeling. But then again, neither have ever had a parallel to, "You're crazy."
Carolyn Sacco, RN has worked as a nurse in psychiatry since 1985, in inpatient hospital, outpatient clinic, and home settings. Jeffrey Geller, MD. MPH is professor of psychiatry at the University of Massachusetts Medical School. He also treats in- and outpatients.