Change the Language, Change the Conversation

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.

Sticks and Stones Can Break Our Bones

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 these terms in the following paragraphs, as well as offer suggestions on how we could change the language.

Stigma.

The word stigma has no immediate meaning to many in the community.

The Merriam-Webster Dictionary defines the word stigma like this:

STIGMA: a scar left by a hot iron, a mark of shame or discredit, a small spot, scar or opening

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 be using instead; discrimination.

Discrimination.

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.

Changing the Dialogue

Mental Illness.

I suggest that by changing the phase of mental illness to brain disorder, a more accurate description, we can change the community’s understanding of we who live with divergent brains. Brain disorder is the term that is the most defining, as 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 showcase to you what I mean.

Scenario One.

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.

Scenario Two.

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 we are seen and how other people respond to our needs. How many families have received the devastating news that their son or daughter has a severe brain disorder, such as schizophrenia, only to find themselves set adrift in the sea of loneliness because the people around them see them through eyes full of fear? This terror is so bad that most people will write off these families, 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.

Consumer.

This term is by far the one I find most derogatory terms used to describe us today.

People unfamiliar with being a client hear this word, and it immediately conjures up in their minds thoughts of resources being used up. They see their hard-earned money being paid into a tax system as wasted on those who use it up needlessly. To them, the word consumer translates as a user.

The Facts that Fight Discrimination

Nothing could be farther from the truth. People with brain disorders are not using 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 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 a newly marketed anti-depressant $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 believe this is, “someone else’s problem, not mine. It will never happen to me.” However, the truth is that no one can say definitively they and their family are immune to chronic disease. The fact is that, according to National Institute of Mental Health (NIHM), approximately one in five (18.5%) Americans will be diagnosed with a mental health disorder this year.  To be frank, with the growing uncertainty, unrest, and loneliness growing in our communities and homes, this figure may rise. This goes to show that no one is immune from becoming consumed with despair and suffering from brain dysfunction.

No One is Immune

If you are thinking there are more people with diabetes and its major cause of obesity, than a brain disorder, think again. The Center for Disease Control and Prevention (CDC) , reports that 39.8% (approximately eight our of ten) of the population of the United States are obese. The economic impact of these two related disorders is enormously costing the United States approximately $210 billion per year.

So, the thinking process that states that brain disorders are using up more funds than other chronic disorders such as diabetes and obesity is not supported by the facts.

Also, every human being on the planet will experience at least one major traumatic event in their lifetimes. These events include the death of a loved one, the loss of a job, or becoming unable to work. The above statistics are a sobering reminder 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, and they say you yourself could develop a brain disorder.

No one is immune. No one.

This discussion has involved only a few of the words and phrases that must be changed in our daily conversations to eliminate discrimination against those who live with chronic brain disorders. Opening a nationwide discussion on the topic 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 can see, that will get the word out more powerfully than we are just ordinary human beings living with chronic conditions 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, White Oleander