Using Lived Experience to Adapt Mental Health Language

By 2021, most of us in the mental health community understand how important language is when talking or writing about mental health.
 
However, with this greater understanding, we must address the question: “How can we further refine the language around mental health?”
 
My belief as a licensed clinical social worker has always been that experts should listen to people with lived experience and pay close attention to how they talk about their symptoms. By using the language of people with lived experience, we can create a more person-centered approach to the way we all talk about mental health. 

Why Does It Matter?

Have you ever had a conversation with another person experiencing similar symptoms as yourself and you carelessly stumble with your wording, causing the conversation to stop or take a dive into the unhelpful or unfriendly? I have, and it’s dreadful. 
 
Perhaps I’ll use the wrong word, something either “too clinical” (like “hypomania”) or “not clinical enough” (like “high mood”). Maybe I’ll rely on a term that is “not person-centered enough” (such as “mentally ill”). The conversation drops from underneath us, and I find myself questioning why I even started talking.
 
What could have been an outlet to discuss a shared experience or symptom — to share empathy and compassion — is derailed by frustration and misunderstanding. This can be both disheartening and flattening. 
 
Those of us with lived experience are particularly sensitive to the language used when discussing mental health. Even practitioners without lived experience are particular on clinical phraseology, which must be used precisely.
 
Ultimately, therapists and peers alike must improve their ability to communicate in a sensitive, accurate and helpful way. We can accomplish this by adapting our lexicon around mental health. 

How Can We Adapt?

The process is threefold: excavate, align, insert. 
 
Excavate
The first step is digging deep in the wellspring of people struggling with mental health symptoms and begin turning their struggles into language. Eventually, the patient and practitioner can identify and mark meaning around their experience to find common ground.
 
By doing this, mental health professionals and peers can begin to identify standard wording and phraseology during therapy or treatment. For example, if a person with dissociative identity disorder refers to their identities as “alters” or “parts,” their mental health professional should take note of that.  
 
Align
As a therapist, I always strive to align my language with my clients’ words. If my client referred to their identities as “alters,” I would refer to them the same way.
 
Additionally, I make a concerted effort to use relatable words or wording like “emotional” to talk about feelings and mood, “struggling” to get a pulse on my client’s “functioning.” Without question, I seem to relate on a better level using this approach.
 
Insert
Inserting is when we take the language used between patient and provider and share it more broadly — so that the whole mental health community can begin to adapt the way we talk about mental health.
 
Inserting can be as simple as pausing during a conversation when approaching a term or word that usually is more triggering than healing and replacing it with a more person-centered, descriptive word or phrase. For example, if I was talking to a patient’s caregiver, I would say “your loved one has schizophrenia” rather than “your loved one is schizophrenic.” And I would encourage them to use the same person-first language.
 
Ultimately, by inserting relatable words into the mental health conversation, we can produce the most person-centered mental health lexicon. This process honors the person’s lived experience, acknowledges their struggle and promotes recovery. Once the new language is incorporated into the existing mental health discourse, we can engage in treatment and discussion that genuinely speaks to people living with mental illness.
 
Nobody likes speaking and not being heard. Nobody likes experiencing symptoms and not being understood. In embracing the three-step process and improved practices around language, we can all get on the same page.
 
Tomorrow’s mental health discourse needs to be centered around a new language direct from the lived experiences of people today.

 
Max E. Guttman is a Licensed Clinical Social Worker (LCSW), mental health therapist and disability rights advocate. Mr. Guttman has worked in various systems of care in New York State, both as a clinician and as a peer. He is an award winning book author and is the editor-in-chief of  Mental Health Affairs, (mentalhealthaffairs.blog) a website for the mental health prosumer.