Words and Language Matter: How We Talk or Write about Mental Illness
October 15, 2021 / Mental Health
by Diana Spore, PhD, MGS
“Nuts.” “Crazy.” “Loony.” “Should be locked up.” “Schizophrenic.” “Bipolar.” “Bound to be violent.”
Words matter when we talk or write about mental illness, mental health or individuals who have psychiatric diagnoses. The words we use matter when someone is behaving differently than we might expect. It matters when you are stigmatized and discriminated against. Even if you have accomplished much in your life, despite—or even because of—your psychiatric diagnosis, it matters when your character is attacked. These things should matter to all of us, given the reported rates of mental illness in our nation, and the escalating need for mental health care that emerged during the coronavirus pandemic.
Use of derogatory, emotionally charged and stigmatizing language has serious ramifications. At the individual level, it decreases the likelihood that people will seek help from mental health professionals when they need to. From the societal level, promoting mental health in our communities improves our economy, our workforce and our quality of life.
Language use is evolving, and our views about the potential for mental health recovery are evolving. Nevertheless, we continue to fight for our rights and safety, and our combined voices are the strongest tool we have. When people are willing to share what has been effective in their journeys toward recovery, they can disarm harmful myths about mental health. Those people with lived experiences can talk powerfully about the ramifications of being a target of stigma, discrimination, defamation, prejudice or hate crimes.
What’s Wrong with Labeling People with Psychiatric Diagnoses?
At the outset, it should be noted that, for many people, the use of psychiatric diagnoses is controversial. There is a growing movement to view psychiatric diagnoses as social constructs, emphasizing that these “diagnoses” have no scientific basis. Even though a psychiatric diagnosis and an assessment of symptoms may be required to receive benefits or for mental health service billing, that should not imply that diagnostic categories are legitimate. Use of psychiatric diagnoses is tightly linked with the medical model of disability. Its weaknesses are increasingly under fire by mental health advocates, who argue that the recovery model or psychosocial model should be emphasized instead. For a comprehensive overview, refer to works by Paula Caplan, who passed away earlier this year.
Another good source of information is the National Association for Rights Protection and Advocacy (NARPA).
NARPA’s vision is to support people with psychiatric diagnoses to exercise their legal and human rights, with the goals of abolishing forced treatment and ensuring autonomy, dignity and choice. Through advocacy efforts, promotion of self-empowerment, and education, NARPA exists to promote social justice for people who experience the world in ways that society often calls “mental illness.”
Person-First or Person-Centered Language for People with Mental Illness
When referring to someone who has a mental illness or a psychiatric diagnosis, it is important to use person-first or person-centered language. Rather than saying, “She is bipolar,” it is preferable to say, “She has a diagnosis of bipolar disorder,” or “She is living with bipolar disorder.” Those of us who have a psychiatric diagnosis, including me, are so much more than our psychiatric diagnoses. It does not define who we are. It can be detrimental to our recovery to be referred to as a label, to feel as if you are nothing more.
However, it must be acknowledged that for some people, receiving a diagnosis can be a relief, offering an “explanation” for what they have been going through or why certain uncomfortable or distressing symptoms had emerged.
When I first received the diagnosis of bipolar disorder, I felt like I had the words engraved across my forehead. I created the following poem when I was still struggling with what the label and others’ negative reactions meant to me:
WHEN WILL THEY SEE THE REAL ME?
Why can’t they see beyond my diagnostic label?
When will they see that I am more than “Bipolar?”
How can I send the message that I am me, just like the “normals?”
Why can’t I fit in and be accepted?
Where can I go and be treated with respect, understanding, and awareness?
Will I ever be seen as someone who has been traumatized, not as being “mentally ill?”
How can I get through that none of this is my fault, and that I am just like “them?”
When will they see that my “symptoms” are not because of some brain dysfunction?
I am me, I am more than a label, I am me.
My colleague, Stacey Roberts, created a poem that reflected her views about having a psychiatric label and a symptom that is frequently misunderstood (hearing voices):
YOU TOLD ME
Numbing emotions from my past, yet not identified…
You told me, I was sick. Paranoid Schizophrenia was my new name.
Family who could not identify with me…
You told me, I was hopeless. A black sheep now distinguished.
Strangers from a distant land saw ME…
You told me, I had an alternative story. The voices were my allies and no longer needed
to taunt me.
Folks in white coats with white oval pills…
You told me, I was wrong. I MUST take them.
ENOUGH – Healing is received from my Creator above…
You told me, I am enough. My story did matter. My voices had meaning.
Stacey now emerging…
Telling others that their lives matter too despite the labels they have received.
Voices echo past hurts and can be your best teachers in healing.
I told the people, they were human.
Being stigmatized can adversely affect a person’s progress in recovery and their willingness to continue to receive specialty mental health services. On a personal level, stigma can reduce hope and decrease self-esteem, result in social isolation, and make you feel that you will never be successful, that your life is basically over. Psychiatric diagnoses can be misunderstood by family members, friends and colleagues. Family members may treat you badly, friends may walk away, and you may lose work relationships. You may feel imprisoned as a result of your psychiatric label, ashamed and wanting to do nothing more than hide, run or even end your life. Yet research clearly shows that treatment works, and healthy social supports can make a difference in recovery. However, once your eyes are blinded by the label, it may be hard to see that you still matter and that your dreams are attainable.
“I don’t believe in ‘mental illness.’ My thoughts, moods, feelings and emotions are not a disease, disorder or an illness. They are me. They are the essence of my being and what makes me a unique human being.” Pat Risser
We need to band together to fight for the appropriate use of mental health language. Unless we focus our attention on using appropriate language, unmasking myths and having individuals in recovery share their stories, it is likely that stigma, defamation and prejudice will continue. When these negative perspectives progress far enough, the risks are real. Let’s rise to the challenge.
Diana Spore is an advocate for individuals facing mental health challenges and those who are living with dementia, a writer/editor, and a mental health consumer in recovery. Spore received her Master’s degree in Gerontological Studies from Miami University (Ohio), and earned a PhD in Human Development and Family Studies, with a concentration in aging, from Penn State. She completed postdoctoral training at Brown University. Spore’s areas of expertise include mental health and aging, mental health recovery and trauma-informed care, medication optimization, long-term care, caregiving, and psychotropic drug use and inappropriate drug use among older adults. She is a former Board member of the Mental Health and Recovery Board of Ashland County (Ohio; MHRB). She was Editor-of-Chief of TAPESTRY OF OUR LIVES, an anthology of works created by individuals in recovery, a project that was done under the auspices of the MHRB. Spore served as Project Lead for a “Writing for Recovery” initiative, MHRB, and engaged in all aspects of the project, which has resulted in sustained spin-off efforts. Diana Spore has expertise in creative writing, writing for recovery, journaling for caregivers, legacy writing, and advocacy writing.