Reversing The Stigma Of Mental Illness: Lessons From ‘Lived Experience’

Written by Kee Dunning, author & psychotherapist providing crisis intervention

June 30, 2021 / 4:14pm EDT / Forbes / WELLBEINGS

In a college classroom filled with nursing students, a young man with disheveled hair and crooked glasses paces back and forth across the lecture platform, quietly speaking to himself. Students sit at attention, watching anxiously. I have seen the look on their faces before – wary observers, uncertain if they should be afraid. One cannot help but wonder what expression they might have if they were to encounter this young man on a sidewalk or in a parking lot. Would they take the time to ask him if he is ok? Or would they dial 911, fearful for their safety?

Would responding police officer arrest him without asking enough questions? Any of these reactions are possible and plausible. But we are not on the street or in a parking lot, we are in a college classroom. I have been asked to talk about mental illness. I have learned that no one can educate people on mental illness like someone who has firsthand knowledge of living with a mental illness.  Therefore, my presence is to support and encourage.  My clients with “lived experience” can often do the teaching. Their voices can guide us.

Back to this young young man. I gently speak his name and place my hand on his shoulder. He stops and looks at me, as if he is realizing for the first time where he is. I ask if he is ok. He answers yes. I ask if he would like to take a break and perhaps present his story later. He is clear and strong that he wants to continue. He turns to the students and asks how they would feel if he were to go change into the clothes he brought. He adds, the clothes in the grocery bag, clutched to his chest, are women’s clothes and he is concerned that the students might judge him. The entire college classroom exhales. Verbal encouragement and kind words rise from all directions. He departs and returns in tights and a skirt. He sits and introduces himself, included in his introduction are his diagnoses, schizophrenia and Asperger’s. (According to the American Psychiatric Association, schizophrenia is a chronic brain disorder that affects >1% of the US population. When a person with schizophrenia is actively in psychosis, they may experience delusions, hallucinations, disorganized speech, and trouble thinking. Asperger’s, a form of Autism Spectrum Disorder is a developmental disorder characterized by difficulty with communication and repetitive patterns of thought and behavior.)

Then the questions begin:  What is it like to have schizophrenia? Do you hear voices? What is it like to have Asperger’s? Tell us about your clothes? What do you think we, as future nurses, should know about taking care of a patient with schizophrenia? In a matter of minutes, the palpable feelings of hypervigilance and anxiety disappear from the room. A scary situation has become an opportunity to learn and embrace this young man for who he is, and more importantly, to demonstrate respect for him. I am not sure this conversation could take place in the average workspace, or at home, but in this environment, the college classroom, an incubator of possibilities, lived experience upstages judgement.

The situation described above has not always been the case for my college-aged client. People assume, because he might act or talk differently, especially when there are signs of mild psychosis, he is dangerous and to be feared. The same thing happens daily to millions of individuals with mental illness. Because of assumptions like these, individuals with mental illness are 10 times more likely to be incarcerated, than helped.  According to the National Alliance on Mental Illness, stigma harms 1 in 5 Americans affected by mental health conditions. They often face rejection, bullying and discrimination.  It can make their journey to recovery longer and more difficult.  It shames them into silence and prevents them from seeking help. 

It can make a difference when we build on establishing respectful relationships and ask “what don’t I know” about the struggles faced by others.  It is a privilege to have the opportunity every day to communicate with other human beings.  Do we squander that privilege, or do we seize it and seek the subtle, but powerful experience of asking, listening and allowing others to express themselves?  Imagine if you took the time to show every human being you encountered unconditional positive regard?  Try it today, for an hour, and then a day.  Practice lessons of listening to the “lived experience” of others.  Be compassionate and conscious of your language, and always encourage equality between physical and mental illness.

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You are not alone. If you or someone you know is in crisis, whether they are considering suicide or not, please call the toll-free National Suicide Lifeline at 800-273-TALK (8255) to speak with a trained crisis counselor. If you don’t want to talk on the phone, you can also text. Crisis Text Line offers free mental health support. Text “10-18” or “SCRUBS” to 741741 for help. The call and text lines are open 24 hours a day.

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Kee Dunning is a psychotherapist in private practice, adjunct faculty and author, writing on topics such as rural youth suicide risk assessment and intervention, cognitive behavioral therapy, teen dating abuse, bullying, and concepts in communication, anger and conflict management. For nearly two decades, Kee has provided crisis intervention for triage for homeless, trafficked, and at-risk youth and families and their support systems; and was Clinical Supervisor for Graduate Studies in Counseling at  Montana State University.

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