The words we use to describe ourselves have a huge impact on how we are treated. If we call ourselves by a term that means something negative, we will inevitably be treated in a negative fashion.
There are terms used to describe those of us who live with mental health conditions. However, those words, including the ones I just used, must be changed. This is the only way to get people looking at diagnoses such as bipolar disorder and schizophrenia differently and opening an open and honest dialogue within the community.
Some will say I’m being politically correct in what I’m about to share with you, but that’s not true. Words carry meaning and no matter how you are politically aligned or even if you are not, we all understand how a word or phrase can make us feel. We all know how labels can determine our fundamental thoughts about ourselves and how we are seen by the community.
We must change our language if we wish to move forward.
I’m going to talk about each of the terms I am speaking of in the following paragraphs, as well as offer suggestions on how to change the language.
The word stigma has no immediate meaning to many in the community.
The Merriam-Webster Dictionary defines the word stigma like this:
Definition of stigma
1 a. archaic: a scar left by a hot iron
b: a mark of shame or discredit
c: an identifying mark or characteristic;
2 a: a small spot, scar, or opening on a plant or animal
b: the usually apical part of the pistil of a flower which receives the pollen grains and on which they germinate.
As can be seen, even looking up the word in a dictionary does little to explain what stigma is all about.
I’ll give you a one-word definition that we should use instead.
Discrimination is a word that everyone can understand. It is exactly what is happening to people with a brain disorder when we are our medical insurance doesn’t cover all our needs but does any other medical issue. This word carries weight because this is something our society has been grappling with for decades.
Persons with brain disorders do not have adequate housing, are forced to live in the streets, and are treated like they do not belong in society. We are ostracized from churches, made fun of in school, and feared. If that is not discrimination then I do not know what is.
People in the United States march in the streets to end discrimination against people of color, and the LGBTQ community. Yet we sit quietly by while people who need specialized care for brain disorders suffer in silence.
I believe that by changing the word from stigma, which does not fit, to brain disorder, which does we can change this tragic misjustice.
This is the term that is the most defining. I am not ill. I live a very healthy and happy life under a doctor’s care, just like someone with diabetes or thyroid dysfunction.
I live with a brain disorder, as do all people who are living with a diagnosis that requires a Psychiatrist, a specialized medical doctor. Can you see how saying to someone you know, “I have a brain disorder” sounds less frightening and more accurate?
Allow me to offer two scenarios to show you what I mean.
Your son has just been diagnosed in the hospital with schizophrenia, and your neighbor visits you to see how things are going. She asks you what is wrong with your son, and you tell her your son was just diagnosed with a serious mental illness. Your neighbor leaves and tells your other neighbors in whispers and hushed tones about your son. After this you rarely hear from any of your other neighbors again.
Motivated by fear, they silently peek out their curtains at you as you get in your car to go and visit him fearful of what he might be like and do when he gets home.
Your son has just been diagnosed with schizophrenia, and your neighbor visits you to see how things are going. She asks what is wrong, and you tell her your son was just diagnosed with a serious brain disorder. Your neighbor leaves and goes to your other neighbors and they organize a food service for you. They keep doing so for a week while you are traveling back and forth to the hospital visiting your son. Motivated by empathy, your neighbors shower you with warm casseroles and get-well cards and look up the disorder you told them about on their computers to see what they can do to help.
The above scenarios aren’t far-fetched. I wish they were. Changing a term makes all the difference in the world about how you are seen and how other people respond to you. How many families have received the devastating news that their son or daughter has a severe brain disorder only to find themselves set adrift in the sea of loneliness because the people around the see them through eyes full of fear. This terror is so bad that most people will write off this family, reassuring themselves that it will never happen to them.
Even faith communities tell themselves that this family is in pain not because their child’s brain is malfunctioning but from punishment. They may feel their child’s “craziness” must have been something evil in either the parents or the child that warranted their suffering.
Changing the thinking of those around us can help to end these tragedies.
This term is by far the one I find most derogatory.
People unfamiliar with being a client hear this word and immediately in conjures up in their minds thoughts of resources being used up. Nothing could be farther from the truth. People with brain disorders are not using up anything. Yes, the procedures, medications and help we need to battle our chronic brain disorders are expensive, but that’s because of the discriminatory pricing of the things we need.
Check out the price differences between the services required by a person with a brain disorder as compared to someone with diabetes type one.
The prices compared.
The cost of seeing a Psychiatrist (Brain Disorder Specialist) is $350/session
The cost of seeing an Endocrinologist (Diabetes Specialist) is $100/visit
The cost of seeing a Therapist is $250/session
The cost of seeing a General Practitioner is $80/visit
The cost of Latuda $1,258/month
The cost of Insulin $100-$200/month
It should be evident from the prices above that treating brain disorders costs much more than treating even common disorders such as diabetes.
There is also the faulty thinking that states, “Why should I pay for people who are chronically ill, I’m not.” Also, people are prone to believing this is, “someone else’s problem, not mine. It will never happen to me.”
No one can say definitively they and their family are immune to any chronic disease.
In our society diabetes and obesity are rampant. To be frank, with the growing uncertainty, unrest and loneliness growing in our communities and homes, no one is immune from becoming despairing and suffering from a brain dysfunction themselves.
If you are thinking there are more people with diabetes than a brain disorder, think again. According to the National Institute of Mental Health (NIMH), One in five (20%) of the population of the United States are diagnosed with a brain disorder.
Now contrast that figure with this figure from the U.S. Center for Disease Control (CDC) which reports that approximately one in nine (9.3%) people in the United States are live with a diabetes. So, the thinking process that states that brain disorders are not as important to treat as diabetes fly out the window.
These statistics prove that your family is more likely to have a member diagnosed with a brain disorder and require lifelong medications and treatment than to develop diabetes.
No one is immune. No one.
When the tragedy of a chronic medical condition visits you or your family, and statistically speaking, it will, who will pay for your care?
Simply Change the language
I realize the state of Illinois has been pressuring to change discriminatory labeling to “person first language”, but more must be done and now is the time.
This discussion has involved only a few of the words and phrases that must be changed in our daily conversations. Opening a nationwide discussion on brain disorders and language must happen if we are to gain ground in our fight.
Ending the discrimination against those of us who live daily with severe brain disorders is paramount. There is no other way that I see, that will get our word out more powerfully than to simply change the language.
“I hated labels anyway. People didn’t fit in slots–prostitute, housewife, saint–like sorting the mail. We were so mutable, fluid with fear and desire, ideals and angles, changeable as water.” Janet Fitch