Anita Ojeda 
Just one little word makes a huge difference in how people view mental illnesses. If we want to help stop the stigma, we need to learn about semantics.
An Honest Conversation
“Pedro, you look terrible!” our friend blurted out as he walked across the empty church lobby.
Pedro laughed, although his face remained mostly frozen and the snort coming out sounded nothing like his usual laughter. After a whirlwind relapse of his non-Hodgkin’s Lymphoma, he looked like an extra from Schindler’s List.
“I’m so sorry,” our friend exclaimed, “I didn’t mean to say that!”
“It’s o.k.,” Pedro said. “I like the truth.”
Our friend had spoken the truth. Pedro looked terrible. His paralyzed face and emaciated frame made his lack of hair, eyebrows, and eyelashes seem like a minor thing.
At no point in the conversation, or any conversation with friends, family, or strangers, did anyone blurt out, “Pedro, you are cancer.” Semantics matter.
Semantics: The language used to achieve a desired effect on an audience, especially through the use of words with novel or dual meanings. The way we refer to someone who HAS an illness matters.
An Observation on Semantics
I had gestational diabetes during my first pregnancy. The diagnosis required immediate lifestyle changes to get me through the last few months of pregnancy. I also had to make lifestyle changes in my late thirties when I realized I could more easily fall prey to Type 2 Diabetes if I didn’t watch my weight. Once you have gestation diabetes, your chances of developing Type 2 diabetes increase by up to 50%, according to the CDC.
A curious thing happens with diabetes. Approximately nine percent of the US population has Type 2 diabetes. People generally know enough about the condition to know those with diabetes have to watch their sugar intake.
I’ve worked with people who identify as diabetic, and people who have diabetes. Those who identified as diabetic—as in “I AM diabetic” always seemed to over-identify with their diagnoses. They turned the phrase, “I’m diabetic” into an excuse or a crutch. Instead of exercising more, feeding themselves healthy foods, and actively trying to reverse the disease, they bemoan their life sentence. Granted, I don’t know a lot of people with Type 2 diabetes, but I have noticed a pattern.
On the other hand, those who take the “I HAVE diabetes” approach seem more balanced in their lives. They have a long-term health issue that requires them to make some adjustments, but they don’t plan on letting their diagnoses dictate their life. These friends always have the right kinds of snacks on hand, they let others know what to do if their condition suddenly worsens, and they have a lifestyle plan. When considering possible limitations, they always ask how they can still do the thing (usually some sport).
If We Want to Stop the Stigma, We Need to Change How We Speak
If we want to help stop the stigma surrounding mental illnesses, we need to start speaking about it as if it were a physical illness.
After all, one would not go around cheerily announcing, “I’m cancer!” or “I’m kidney failure!” or “I’m heart disease!” One HAS those medical conditions. The having rather than the being expresses inherent hope of using lifestyle changes, medical intervention, and follow-through, things will normalize.
When we refer to someone as schizophrenic or bipolar, we unconsciously dismiss them as less-than. Without meaning to, we take away their normalcy and replace it with a diagnosis. And for each of the hundreds of mental illness diagnoses, we talk about them differently. No one says, “My mom is Alzheimer’s,” but we often hear someone say, “my daughter is autistic.”
But what if we said, “My daughter has neuro-diverse ways of processing the world” rather than “my daughter is autistic.” Everyone understands the concept of diversity—even twins have differences. “My son has bipolar disorder” sounds so much more helpful than “My son is bipolar.”
When someone HAS something, like cancer, we immediately want to know the treatment plan. In fact, when Pedro had cancer, complete strangers would offer their opinion on the best treatment or ask about what protocol he had chosen.
Even with Alzheimer’s, we know to ask about medication, what helps, and what confuses. We have a general awareness of things we can do to come alongside a person who has Alzheimer’s.
If we started to refer to all mental illnesses as something someone HAS rather than something someone IS, how would things change? #StoptheStigma #bipolar #alzheimers #autism Click To TweetHaving Doesn’t Always Mean Getting Well
Some physical illness have no cure, just like some mental illnesses have no cure. And some physical illnesses have a comeback codicil. But eventually, one learns to live life in the present and ignore the shadowy scepter of relapse.
It took a few years to realize that every time Pedro had a sniffle, a headache, or a bout of dizziness that a rational reason existed to explain each of these things (common cold, dehydration, standing up too quickly). I fought against hyper-vigilance and helicoptering.
If you have a family member who receives a mental health diagnosis, remember to rein in your inner vigilante and refuse to fall into the trap of analyzing every laugh, giggle, unusual text or delayed response. These things do not mean your loved one has relapsed into mania or sunk into depression. Hyper-vigilance and helicoptering don’t serve anyone well.
Hacks for Helping to Stop the Stigma
1. Get in the Habit of Having Rather Than Being
It may take a month, six months, a year, or even two, but train yourself to refer to all mental illness as something people have rather than something people are. This one action will do the most to help stop the stigma of mental illness. It just seem like semantics, but semantics make a difference over time.
2. Find Ways to Come Alongside
Find ways to come alongside someone with a mental illness. Ask if they have a plan for what to do if their friends or family notices them sliding into depression, mania, or obsessing over food. Find out in times of stability how they want you to act during times of instability.
3. Accept the Person’s Limitations
Just like you wouldn’t push cake an ice-cream on a person with diabetes, you wouldn’t want to push late nights on a person with bipolar disorder. Find out if your friend or loved one needs to avoid certain things (alcohol, lack of sleep, or lack of routine can exacerbate symptoms of some mental illnesses).
If someone says they need to take a nap, go to bed, or eat something, don’t argue, poke fun, or cajole them. You don’t need to know the details just accept the limitations the person has to live with.
4. Separate the Behavior from the Being
If you know someone with bipolar disorder, you may have developed a sensitivity to phrases such as crazy, around the bend, manic, loco en la cabeza, or insane. No one wants to get labeled as crazy. Once again, semantics comes into play here. A person experiencing a manic episode my do things that seem unreasonable or crazy to those who love them. But that doesn’t make the person permanently crazy.
If we want to help stop the stigma, people’s inexplicable behavior should engender compassion in us, not labels.
5. Reach Out Even if it Feels Uncomfortable
If a friend or someone you love seems to be struggling, reach out. Let them know you respect their privacy but stand by willing to help and support in whatever way feels right. Only through open conversations, education, acceptance, and planning can those with mental illness experience the support that they need to navigate the confusing waters of their diagnosis. Above all, they need to know that they are not alone. They are not pariahs.
I hadn’t considered the difference between “being” and “having” any kind of illness, but the difference in perspective makes sense.
Barbara Harper recently posted…Is It Wrong to Be Right?
We are quick to label and slow to understand. Thanks for all the ways you help!
Michele Morin recently posted…What Does God Want Me to Know (And to Do!) About My Anxiety?
This is definitely a tricky, and sometimes thorny and hotly debated topic, and generalizations don’t really apply.
Here’s a good article to consider: https://autisticadvocacy.org/about-asan/identity-first-language/
And a quote from that article that engages with the thoughts you presented here. (Interesting that they refer to cancer!):
“One argument I encountered in one of the more cogently-written papers in favor of person-first language expostulates that because cancer patients are referred to as ‘people with cancer’ or ‘people who have cancer,’ as opposed to ‘cancerous people,’ the same principle should be used with autism. There are some fundamental flaws with this analogy, however.
Cancer is a disease that ultimately kills if not treated or put into long-term remission. There is absolutely nothing positive, edifying, or meaningful about cancer. Cancer is not a part of a person’s identity or the way in which an individual experiences and understands the world around him or her. It is not all-pervasive.
Autism, however, is not a disease. It is a neurological, developmental condition; it is considered a disorder, and it is disabling in many and varied ways. It is lifelong. It does not harm or kill of its own accord. It is an edifying and meaningful component of a person’s identity, and it defines the ways in which an individual experiences and understands the world around him or her. It is all-pervasive.”
As for me, I’ll always follow the labels that individuals and advocates from that segment of the population support. Thus, in line with the Autistic Self Advocacy Network’s position statement, I’m the proud parent of an Autistic son! If, when he is older, he prefers a different term, then I will respect that. But his Autisiticness is part of his very being. It is inseparable from him and a beloved part of his identity. I will raise him to be proud of it.
Also, some people with diabetes prefer the term diabetic while others prefer person-first language. Always important to ask the person what they prefer.
Here’s my last good article and quote to share (https://healthjournalism.org/blog/2019/07/identity-first-vs-person-first-language-is-an-important-distinction/):
“With mental health disorders, it’s usually best to use person-first: a man with schizophrenia (not schizophrenic) or woman with bipolar disorder (not a bipolar woman). However, when you get to conditions that relate to different ways of perceiving or interacting with the world, person-first is often discouraged by those in that community, the source I prioritize highest. Two examples are autism and deafness.
Most deaf people prefer identity-first language, not person-first, and they reject ‘hearing impaired’ because many do not perceive an inability to hear as a deficit. (Deaf also should sometimes be capitalized.) It’s always best to confirm with the person if there’s one person involved. If there isn’t, then I default to what the community at large generally uses. For me, a community’s preference trumps even ‘official’ sources, since agencies such as the CDC do not always recommend what the community itself prefers (e.g., deafness here.)”
Also, despite what official sources may say, autism is not a mental “illness” the same way something like OCD is. Autism is a developmental disorder like blindness from birth, ADHD, cerebral palsy, Down Syndrome, etc. Many of these communities (and, increasingly, communities of people who have OCD, and other mental disorders, etc) are owning their labels and claiming their rightful identities. I think this, more than anything, helps stop the stigma. You can be Autistic and proud of it. You can be anxious and have OCD and panic disorder and proud of who you are, as I am increasingly learning to do. 😊
You bring up some excellent points! It frustrates me that things such as autism get lumped in with depression–when clearly, they are not the same. Maybe part of stopping the stigma includes coming up with a third classification. You’d think that would have happened by now. After reading The Premonition by Michael Lewis, I have absolutely no confidence in the CDC ;). More than anything, my goal is for people to start thinking, discussing, and questioning how we currently talk about conditions–whether they be mental, physical, or developmental. Thank you for broadening our conversation even more.
TQM!
<3
“Has” versus “is” makes all the difference in the world when it comes to labels and stigma. What great insight!
Karen Friday recently posted…Connect Who You Are to Whose You Are
OH MY GOSH, Anita, I have been harping on about this exact thing for years! Nothing fuels me to jump up on a soapbox faster than the words “Oh she/he/insert whatever pronoun is bipolar.” My immediate response is stop them in their tracks and correct their semantics. I usually use cancer or the flu as my examples. You are exactly right, we don’t say about a cancer patient, “They are cancer.” And we don’t go to the doctor suspecting we may be the flu. Why, oh why, do we identify “invisible illnesses” as if we are them and they are us? Literally from the moment I dropped that phrasing from my vocabulary, I started to heal on my mental health journey. This tiny little thing is so, so huge for healing! Thanks so much for addressing this topic.
Shelbee
http://www.shelbeeontheedge.com
Great point and tips. You know, it has been out of vogue for several years to call someone “retarded”. As the mother of a child who fits this category, it doesn’t offend me used in the right way. Her development is retarded. That’s a truth. It is only when people use it as an insult or a substitute for “stupid” that I’m offended. It’s not the same thing.
Lauren Renee Sparks recently posted…May 2021 Monthly Muster
One little word can change the whole “feeling” of the words we speak. If we were all more cognizant of this there would be fewer hurt feeling & uncomfortable situations. God guide every word I speak today!
Barb Hegreberg recently posted…Poppies & Memorial Day
I never thought about the difference between “have” and “am” when referring to an illness, but you are right. It makes sense. People are not their illness. Thanks for point #5. Reaching out may at first make us uncomfortable, but it is important that people who have a mental illness are not alone. There is no reason for them to be shunned.
Laurie recently posted…Currently In June
This is so good! The power of what we speak impacts so much about ourselves and others. You give such helpful suggestions – I particularly like this: “Find out in times of stability how they want you to act during times of instability.” The semantics of being and having from what you explained seemed to show the difference between speaking life in one’s life, speaking hope. It can make such a difference in how we perceive ourselves and our circumstances!