Stigma Isolates, Humiliates, and Separates
As I think about what to write today, my thoughts are filled with a comment I received from a man who’d read last week’s blog, which you can read here. He wrote that he also suffers from bipolar 1 disorder and was upset and hurt by the description of the young man in the story who showed signs of violence. For him, a description like the one I wrote perpetuates stigma because it portrays someone suffering from a psychiatric disorder as a “dangerous” person.
Pause. Deep breath here. Not what I intended.
My concerned reader made the point that he takes medication to manage his symptoms and works hard to keep them from dominating his life. He emphasized that he had never thrown a lamp or a table (like the young man I’d described) … which is often the case. Most of the time, mood dysregulation is not accompanied by physical explosiveness or violence. He was right.
And he felt that last week’s blog misrepresented him and others like him.
It was heartbreaking to me that this reader felt hurt by my story. I never want to cause pain to anyone with my writing. But it can be hard to prevent. My readers come from a wide variety of backgrounds and experiences. My practice, on the other hand, consists primarily of the most ill, treatment-resistant patients for whom medications have failed.
So today, I want to go a little deeper and talk about stigma and the damage it causes.
And I want to explain why I write the accounts I do of severely ill patients and how they suffer.
The Pain and Marginalizing of Stigma
So what is stigma anyway?
We get the word “stigma” from the ancient Greeks, who used it to describe a mark made on the body that signaled to others to avoid or shun the bearer of the mark. And, we use it the same way today. Except in our present culture there’s no need for a mark on the body… with our words we make a mark on the soul.
Stigma creates shame, disgrace, humiliation…and the bad reputation that goes with certain things in our society. It’s associated with anything in someone’s life that labels them. A label that results in judging someone by the label rather than on their own merits.
Labels like this separate people from the group just as lepers were separated from the city in ancient times.
An example might be the experience of prison. When someone breaks the law and is sentenced to prison, that label hangs over them, as much within themselves as from the outside. This person might feel they’re “less than” others, that they deserve less respect. And they’ll almost certainly run into narrow minded people who will hold that fact from their past over them… impose upon them the pain and marginalizing of stigma to bring them shame and humiliation.
But the fact is, that some of those who spend time in prison continue a lawless lifestyle and others use the opportunity to improve their lives and accomplish great things. Still, it’s fair to say that improvement isn’t easily won. That person has to work very hard to rise above the experiences from his or her past.
Another example of stigma seems to accompany psychiatric disorders. There are those in our society who still associate the need for psychiatric treatment as a sign of weakness, “craziness,” and/or questionable character.
Working to Reduce Stigma and Increase Enlightenment
As we work to reduce stigma, and open conversations about brain disorders, behavior disorders, and the medications we use to manage them, we have to look honestly at individuals, and who they are. And we need to try to understand each other.
Because not all diabetics are alike. Not all the people with bipolar disorder are alike. Not all the people with PTSD are alike. Each one is an individual — with their own unique needs, symptoms, challenges, and vulnerabilities.
Most of us know someone who suffers from diabetes, either Type 1 or Type 2. There is some amount of stigma associated with diabetes. If you’re well informed about this condition, you know that while diet and exercise can help improve the condition for people with Type 2 diabetes, there is nothing someone with Type 1 can do to make this condition go away.
It’s pretty short-sighted of anyone who tells a person who suffers from this disease that they just need to stop being so sloppy about how they take care of themselves.
While it’s true that diet and exercise can improve their control of symptoms, it’s a disease that progresses and is not preventable.
Words can cut deeply … and we never really know the story that people keep hidden in their hearts.
In both cases, diet and exercise help in its management, but that’s true in a wide variety of illnesses. People with coronary artery disease, arthritis, hypertension, asthma, obesity, as well as depression, bipolar disorder, PTSD, and more…all can enjoy improved symptoms through diet and exercise. Improvement. Not cure.
The cruelty of stigma lies in the cutting words and attitudes the “unenlightened” use to build a box around an individual without knowing his story.
Pain and Marginalizing of Stigma ISOLATES
Disorders like bipolar I disorder, bipolar II disorder, major depressive disorder, PTSD, substance misuse, dependence and addiction, eating disorders, OCD, panic disorder, ADHD — are not understood…and are not familiar….to a very broad segment of society. And what human nature doesn’t understand, human nature too often misjudges.
But what we DON’T want to do is marginalize individuals no matter what their experience is.
And just what do I mean by “marginalize” exactly? I mean that I don’t want anyone to feel shut out, alienated, trivialized, or ignored in any way by my words or actions. Whether you use all your strength to hold your symptoms under control or whether your medication helps you do that, your experience is important. You are important. And you matter.
When someone suffers from one of these disorders, but has no outward symptoms — because of medication or their own unique disease process — they can feel blocked out and unheard…misunderstood and not represented.
(By the same token, if you only know someone who takes medication that’s working, and never has any symptoms that show, it’s super easy to think that people with psych disorders should have their symptoms under control. Nothing should show.)
Maybe you know someone with kidney disease who looks and acts like anyone else. And maybe I know someone with kidney disease who is thin, pale, with only patches of hair. When I meet your friend I may believe there is no way your friend is ill. And you may believe that my friend has something much worse than kidney disease because she looks so terribly ill.
But in fact, they both have the same disease but it differs in severity.
Why Assume Everyone’s the SAME?
This is the case with disorders that are related to the brain. Why is a disorder more severe in one person than another? I don’t know. I may know some factors that could affect its severity, but I don’t know why one person has bipolar I disorder and another has bipolar II, or a third person has cyclothymic disorder.
None of these three got off scot-free. They all suffer.
And why does one person respond to medication and another doesn’t? If I knew the answer to that, I’d go on vacation more often! These are questions I’ve been studying to find answers to all the years I’ve been a psychiatrist.
For those who respond to medications, I’m very glad and thankful. For those who don’t, I search and read and research and seek hope for those patients. And when I write about people with severe cases of their illness, it’s to show others who suffer in this way that they aren’t forgotten. That there is no shame in their symptoms. Because in their case, the medicines aren’t working. And the symptoms run rampant.
It can be devastating.
Don’t Misinterpret Symptoms: Hollywood vs. Reality
And I want to add –quickly– that a table or chair that is flung out the window is not necessarily a sign of danger to others. It signals dysregulation, sure, and warrants a very careful assessment. Because often, even someone who is markedly dysregulated can draw the line between hurling an inanimate object and hurting another person.
Hollywood has a way of exploiting the human suffering of mental health problems, to intensify fear. That’s Hollywood. Get to know individuals and take note of how they differ from what you see on the big screen.
Coronary Artery Disease
One of my neighbors has coronary artery disease. He took medications, but eventually had to have open heart surgery. Does that mean that everyone with coronary artery disease needs open heart surgery?
No. In fact, I have a relative who has coronary artery disease, who manages to live a full life with medicines, diet, and exercise and has never needed surgery.
These individuals tell their own personal stories. And report their own personal symptoms.
Words can be so hurtful even when they’re not intended to be. We’ve all done it. Without realizing someone’s personal story we tell the story of someone else that’s too close to their own…and it sounds to them like we’re judging them.
Pain and Marginalizing of Stigma… is Cruel
By the same token, when a treatment or clinic pops up that seems to promise a world of wonder to everyone, (which nothing can do, by the way), people can feel trivialized and ignored. Because they may not fit in that “slot” for a variety of reasons.
Let’s put up our antennas and notice when the pain and marginalizing of stigma has someone walled off from the world. Alone. Isolated.
Psychiatric disorders marginalize people, and we marginalize them, too. Every doc-in-a-box or one-size-fits-all protocol marginalizes your individual experience of suffering by suggesting there is a panacea.
Of course, there’s no universal cure, but there IS hope in a jar. Remember that story?
That was the story of ketamine treatment as a medicine prescribed “off label” because of its unique healing abilities in addition to the purpose it was FDA-approved for.
One Size Fits Some
ONE SIZE DOES NOT FIT ALL. Each patient needs to be custom treated for his own individual version of disorders. Each person also needs to be ACCEPTED and supported for who he is, and what he manages in life.
Let’s vanquish the pain and marginalizing of stigma. Let’s stop leaving people isolated in their suffering. And let’s look people in the eye and seek to understand their struggles.
If you don’t know what he manages, ask him. Let’s try harder to get to know each other, and respect each human for the life he or she manages.
And you know what? If you suffer greatly, or if your struggles are partially managed by medication, I want to hear from you. Not that I can solve your challenges, but you matter to me. And you matter to a lot more people than you may be aware. You are included here. And your experience can help someone else feel less alone in the world. Please share your comments below.
We want to help you experience some degree of relief from your symptoms, whether it be a little or a lot.
To the recovery of your best self,
Lori Calabrese, M.D.