In the Name of Mental Illness

We are doing this all wrong. After decades of progress and research and countless public advocates sharing their personal stories, we are still getting this wrong. Mental Illness is not an adequate umbrella. As we wend through our third pandemic year, all of us having lived through a traumatic experience, we are freer now with our talk about mental health. Let’s seize on this moment. 

I am working professional, and I have a mental illness. I am productive (sometimes to my detriment), social, intuitive, skilled, and live a full, satisfying life. My mental illness manageable, sometimes flares up, sometimes presents huge challenges, and has, at times in my life, impacted my career. But mostly, it does not. Some people are living with a mental illness. Some people are coping with a mental illness. Some people are struggling with a mental illness. Some people are suffering from a mental illness. None of us—let me say that again—none of us are our mental illnesses. 

Do a Google search for “mental illness” and you will find definitions, health organizations, news articles documenting the current landscape of challenges for our youth, links to advocacy campaigns and so on. Now do the same for “mentally ill”. Besides the array of medical organizations and pseudo medical organizations offering definitions, you will find news articles about crime and homelessness. What is the difference here? A verb. 

To have a mental illness is to have something separate from oneself. I have a cart full of groceries. But to be mentally ill is to become a mental illness. I have a mental illness. I am not a cart full of groceries. The dehumanizing nature about which we describe millions of people is a way of distancing ourselves from them, dismissing them, looking down on them, pitying them. It is alienating and cruel and does nothing to address a system we all know is flawed but don’t want to invest the energy into fixing either because if it doesn’t affect us immediately, it isn’t relevant; or because it might cause us to admit to a part of ourselves that relates to something stigmatized. 

That’s the first thing we’re getting wrong. The second is the umbrella. Clinically, the term mental illness encompasses a wide array of disorders and conditions, ranging from anxiety disorders to personality disorders to psychosis 12 . In the clinical diagnostic world, the umbrella is approached by lifting it to examine the person it shields. But when the term mental illness is applied in public settings—think morning news shows, local crime articles, casual conversations—all of the subheadings are squeezed under one umbrella. ADHD and schizophrenia are not alike, nor are social anxiety and psychosis. We need to do a better job at peering under the umbrella at the group of people still getting wet and hand out individual ones instead. 

I have anorexia nervosa. I have had this mental illness since I was an adolescent. When it reared its head in the 90s, I was fortunate enough to have a supportive family and access to treatment. Unfortunately, it was still the 90s. The umbrellas were flimsier then.

1 National Alliance on Mental Illness. (2022). Mental Health Conditions. https://www.nami.org/About-Mental-Illness/Mental-Health-Conditions
2National Institute of Health. (Accessed 2022, August 9). Statistics: Mental Illness. https://www.nimh.nih.gov/health/statistics

When I was admitted to the University of Iowa’s inpatient hospital smack in the middle of my freshman year of college, clinical diagnostics were reliant on the DSM IV. In this version, the first criteria for diagnosing anorexia nervosa is the “[r]efusal to maintain bodyweight at or above minimally normal weight for height/age 3”. Several years later, and long after my fifth hospitalization—a ten month stint in a residential hospital near an otherwise serene lake in Wisconsin—that version was updated to the current version, the DSM V. In this version, the first defining criteria for diagnosing anorexia nervosa is the “[r]estriction of energy intake relative to requirements, leading to a significant low body weight in the context of the age, sex, developmental trajectory, and physical health.” 

The difference again is the language. The first ascribes motive to a mental health disorder, as though the lot of us were sitting there like toddlers in oversized shirts, pouting as some good nurse tried to gently open our mouths with a spoonful of applesauce. The updated version of the DSM removes the assumption of petulance, defiance, and childishness, and instead allows a clinician to ask: what’s going on here? Why might this person choose this behavior? In other words, it prompts the provider to lift the umbrella and see the human beneath. 

During that first hospitalization, I was given Xeroxed copies of Cognitive Behavioral Therapy workbook exercises to fill out, instructed on how to eat a corn muffin properly (who knew there was one way?), and observed as I went to the bathroom to make sure I wasn’t getting rid of any food (we were not to be trusted, of course). My early treatment traumatized me in a way that I carry with me: forever blaming myself for the heartache my parents felt, the disruption to my education, the permanent effects of 25 years of osteoporosis. Even when I know it wasn’t a choice to have a mental illness, the effects of that message are additional challenges I have to address every day. 

What I’m saying is that language matters. It matters in diagnostic terms and colloquial terms, in a doctor’s office and on a morning news show. It matters years later, long after someone has learned reflexively to call a safe person when the thoughts creep in. It matters to the people we love and live around right now, whether they tell us or not. 

The third thing we’re getting wrong is the conflation of the terms mental health and mental illness. The National Association of Mental Illness (NAMI) makes the distinction to use the term mental health conditions, rather than mental illnesses. They have found a diplomatic and compassionate way to provide us an umbrella. There are mental health conditions that are situational, like depression after losing someone we love, and some that are caused by outside events, like PTSD. Still, those are different from biologically or genetically linked conditions, like OCD, bipolar disorder, or autism 4.

When we talk about managing mental health, it’s incumbent upon messengers in public health and the media to distinguish between mental health and mental illnesses when addressing broad audiences. It’s 

3 National Institute of Health. (2016, June). DSM-5 Changes. Implications for Child Serious Emotional Disturbance. SAMHSA. https://www.ncbi.nlm.nih.gov/books/NBK519712/table/ch3.t15/
4 National Institute of Health. (2013, March 18). Common Genetic Factors Found in 5 Mental Disorders. NIH Research Matters. https://www.nih.gov/news-events/nih-research-matters/common-genetic-factors-found-5-mental-disorders#:~:tex t=Scientists%20have%20long%20recognized%20that,disorder%2C%20major%20depression%20and%20schizophre nia.  

insulting to someone who has spent decades learning to manage major depression to suggest deep breathing or “looking at the bright side” might be a be a novel approach. Major depression is not situational depression is not bipolar depression. Lumping these conditions together dehumanizes the individuals experiencing them and reduces their genuine challenges to the level of a paper cut. People with mental health conditions are not dumb. They might be in pain though, and that requires a more compassionate approach. 

What I’m suggesting is this: when we collectively talk about mental health, let’s not use headlines that lump criminality and mental illness into sentence fragments meant to generate clicks. Let’s use people-first language wherever we can. Let’s find nuanced ways to talk about mental health conditions so that job applicants aren’t afraid to categorize themselves as something they’re not and risk a potential employer seeing them as inadequate. So that families can help identify someone’s unique situation sooner. So that people who have years of experience learning to manage their illness aren’t afraid to speak publicly and maybe, just maybe send the message to someone struggling that they aren’t alone. 

And please, let’s find better ways to support people with different mental health conditions than chatbots, deep breathing apps, and gratitude journals. I cannot tell you the amount of times someone has offered me food in response to seeing my underweight frame. Thankfully, we have come a long way from those days of assuming mental illness could be reasoned away. But we can still do better as a society and especially as communicators to show off our deeper understanding. Choosing our verbs seems like a simple place to start.