Suicide Donuts and TV Stereotypes
Stigma about mental illness is killing people
By C.A. MacConnell(C.A. MacConnell is a Cincinnati freelance journalist.)
Each time I tell my story, here’s what happens: I lose friends, jobs and acquaintances. Throw dating out the window, too. After I lose a job, some others won’t want to hire me. Not because of my job performance, stability, personality or education, but because of my diagnosis alone – the two words – bipolar disorder. As if, through writing and speaking about brain disorders, I have committed a crime. Which I haven’t. My record is clean. And I am clean. I’ve been sober for almost 12 years. People have doubted that, too.
As I write this, I know that I face the possibility of overwhelming judgment. Soon. Anxiety sets in, then insomnia, then exhaustion. Not symptoms from my illness, but from the effects of stigma. I know the reality – that being open about my diagnosis and my honest experience with societal stigma will soon dramatically affect my life. It has happened in the past. And I know it could happen again.
Damn, I’m tired. Tired from the fight. The fight against stigma. Bipolar disorder is a medical brain disorder, not a character flaw: “We now know that mental health disorders have a biological basis and can be treated like any other health condition. Even so, we still have a long way to go to overcome the many misconceptions, fears and biases people have about mental health, and the stigma these attitudes create.” (www.mayoclinic.com)
Bipolar people have a neurochemical difference in their brains. The National Institute of Mental Health (NIMH) writes, “Symptoms of bipolar disorder are severe. They are different from the normal ups and downs. …Like diabetes or heart disease, bipolar disorder is a long-term illness that must be carefully managed throughout a person’s life.”
But every time I speak, I put myself at risk. Over the years I have traveled throughout Ohio, speaking on behalf of those with brain disorders. I have met with state representatives. I have spoken at universities, the National Alliance on Mental Illness (NAMI) and countless other organizations. I appeared on the Channel 9 News. I put my face with it.
One in five die
Some say that brain disorders are not real diseases, but a crutch. Some say it’s solely an environmental, food or stress-related reaction. Sometimes these things can trigger a relapse, as with any chronic illness; but the source is brain chemistry, and it requires medical treatment. Others say it does not exist. The “all in your head” approach. Why would I make it up? So that I could enjoy criticism, lack of employment and loss? Right, I’m making up something so that I can endure years of pain and suffering and later be slammed for being honest? I’m making it up so that I can deal with extensive periods of medication trials and errors, numerous side effects and go in debt because of medical bills? Right, it would make sense that I would make this up. Ridiculous.
“Bipolar disorder affects more than 2.5 million adult Americans every year. …As many as one in five patients with bipolar disorder completes suicide,” according to the NIMH. There are other brain disorders. My grandfather had Alzheimer’s disease, for example. Both are chronic, lifelong, life-threatening illnesses of the brain. Yet with mental disorders, often the public reaction is completely different. I daily see Websites, Facebook quizzes and groups, TV shows, MySpace blogs –and on and on – either representing a brain disorder as scary or treating it lightly. This morning I talked with a woman whose son was diagnosed bipolar after his death. After? He was afraid to reach out, due to stigma. Then it was too late. I hear these stories constantly. Some of my friends have died because of this. Gone, dead.
Due to stigma, sick people are afraid to seek help. Or they think treatment doesn’t work. So the next time you see a man or woman sleeping on the street, take a closer look. He/she could be suffering from an untreated medical illness. Exactly like me. I’m just lucky enough to have support and medical help. Is that fair?
When patients enter a psychiatrist’s office and are dishonest about their sobriety, their behavior might mimic that of a bipolar individual. So they might get misdiagnosed. But in my case, my symptoms appeared full-force at one year of sobriety and got much worse by two years of sobriety, not better. It struck with classic timing – early twenties – a common case for bipolar individuals. My symptoms were real signs of brain dysfunction and had nothing to do with laziness or withdrawal.
Are others misdiagnosed? Yes. In a July 29, 2009 issue of Science Daily, results of a recent study at Rhode Island Hospital and Brown University showed that “patients who had been over-diagnosed with bipolar disorder were more frequently diagnosed with major depressive disorder, antisocial personality disorder, posttraumatic stress disorder and eating and impulse disorders.” This can happen due to many factors that depend on a patient’s symptoms, honesty, history with substance abuse, environment and more. Doctors are only at the baby stages of research.
In bipolar individuals, the brain is wired differently, according to Jon-Kar Zubieta, M.D., assistant professor of psychiatry and radiology at the U-M Health System.
“Now we must expand and apply this knowledge to give them a treatment strategy based on solid science, not on the current method of trial and error,” he writes. “We should also work to find an exact genetic origin and to relate those genetic origins to what is happening in the brain.”
Doctors get a bad rep. But these misdiagnoses, these facts, are thrown into the limelight to promote stigma. Instead of glorifying mistakes and discouraging treatment, we desperately need support for research, funding for advocacy and education. Many doctors are right. Dead on. Problem is, by the time people get there, due to roadblocks of societal negativity, they’re often unwilling or so sick that it makes treatment utterly difficult.
The correct diagnosis can take time. Individuals with bipolar disorder face up to 10 years of coping with symptoms before getting an accurate diagnosis, according to the Depression and Bipolar Support Alliance. First, I was diagnosed with clinical depression. Then schizoaffective disorder. Then a general psychotic disorder. It took two years before they correctly diagnosed me as bipolar, and by then I was in a suicidal, comatose depression. With better understanding and more support from society in general, I might’ve avoided having such a traumatic episode. I am unbelievably lucky to be alive.
Jokes can kill
I am not psycho, crazy, nuts. I am intelligent, devoted, sincere, and I thankfully have a supportive family. I work hard, pay my bills. I have a master’s degree. My last episode was in 2005, when one of my medications stopped working, and we had to adjust the treatment plan. That took a while. Treatment for any chronic illness often takes a while. It takes time and unbelievable strength.
When people are diagnosed with other chronic illnesses, the mass public shows genuine support. They have benefit shows, fundraisers. There is an enormous level of empathy. People with mental disorders get this response instead: In Campbell, Calif., is a new company called, “Psycho Donuts.” Its Web site says, “Psycho Donuts has taken donuts to the next demented level. …Psycho Donuts has taken the neighborhood donut and put it on medication, and given it shock treatment. …Even if you’re not certifiably insane yourself, you’ll still find a handful of donuts from the past.” A few of their donut choices are called, “Bipolar,” “Manic Malt” and “Psycho.”
What if it was called “Chemo Donuts?” That would cause an outrage. “MS Donuts?” And what if the names of the donuts poked fun at these illnesses? People would be running in there with protest signs.
Extremely abundant promotional tools such as this serve as great fodder for stigma; they need to be addressed with extreme seriousness. Stigma is deadly. Yet as of today, according to an America Online poll on Psycho Donuts, 60 percent of people think the “theme is appropriate.” Really? Tell that to the mother I know whose schizophrenic son committed suicide. Tell that to all of the countless people I know whose loved ones died due to the affects of stigma and lack of treatment. My illness is a scary joke? It’s OK for people to commit suicide as long as we have our donuts?
It’s OK for some kid to end up in the psych ward again, as long as we have our Facebook fun? It’s OK for me to get abused at work, as long as the abuser’s clients keep rolling in? It’s OK for us to get scared at Halloween haunted houses when someone jumps out at us wearing a straight jacket, because it’s funny-scary, right? I’ve seen someone in a padded room. It is not funny at all. Go visit the top floors in hospitals, the psych wards. Yes, the top, top floors. We are still hidden there. And those are not funny either.
My depression was so low in 1999 that medications couldn’t touch it. Shock treatments are actually called electroconvulsive therapy (ECT), because that’s what it is – therapeutic. Yet countless movies depict it as horrifying. I was under anesthetic. I felt no pain. The doctor was professional and kind. I had posttraumatic stress because of stigma, not because of the treatments.
ECTs are commonly used today to treat severe depression and psychosis. This treatment literally saved my life. Every time they are depicted as painful, degrading, terrifying or severely strange, it deters desperately sick people from getting the help they need. Many more lives could be saved if it weren’t for these harrowing representations. And yet we have to poke fun at brain disorders, don’t we? We have to have Halloween fun, TV scares, Internet groups and movies directed at making brain disorders into a freak show? All the while, people are dying.
Is this 2009? ’Cause it sure feels like we’re stuck in the dark ages on this one. And I’m begging people to come out and see the light.
I watch crime shows. As a writer, I’m very interested in the storytelling methods, the dialogue and the subtle clues. But here’s an idea: How about, every now and then, writers make one of the detectives have an illness, rather than the murderer? How about the detective gets sick, finds treatment and gets better? Show that treatment works for once. What if, on one show, a sick criminal found treatment and recovered? What if the person started helping police, helping other criminals, becoming successful, all while still managing an illness with successful treatment?
Sure, some people with brain disorders are criminals. Some people without brain disorders are criminals. Some of my friends with brain disorders are highly successful professors, doctors, artists and more. Others are unemployed and struggling. Some are geniuses. They are all over the map, just like everyone else. So let’s show it like it is. How about on TV we see doctors, lawyers, comedians and police officers with brain disorders, because in the real world, this is the case. Not only would this be freeing for those with brain disorders, but it would also be fresh creatively. I want to see writers embrace both sides – the ones who get sick, and the ones who get better. Because in life, many people do get better. Let me write for one of your shows, kill the stereotypes and make it real.
I have seen the sickest of the sick recover, but, as Mental Health Works explains, “Due to stigma, the typical reaction encountered by someone with a mental illness (and his or her family members) is fear and rejection. Some have been denied adequate housing, loans, health insurance and jobs due to their history of mental illness. The stigma attached to mental illness is so pervasive that people who suspect that they might be mentally ill are unwilling to seek help for fear of what others may think.”
Work. People with brain disorders get situations such as this. Once I lost my job due to a relapse. Fatigued, stressed and anxious, I knew that my medications needed adjustment. Daily growing more ill, I was terrified to tell anyone, because I had known severe consequences with revealing my illness to past employers. I did tell my boss that I needed a break. No break. Afraid to reveal my diagnosis, I got worse. I needed medical help, but instead I had to “tough it out,” keep my mouth shut, and then it was too late. I became incredibly sick and ended up in the emergency room soon after.
Telling the boss is seen as so risky that “the vast majority” of workers with mental illness still hide their condition, according to Professor Marjorie Baldwin, an economist with the School of Health Management and Policy at the W.P. Carey School of Business and co-author of the study, “Perceived vs. Measured Stigma Against Workers with Mental Illness.”
What if I could’ve said, “I need to see my doctor, change my meds and then I will be back full force.” I might’ve kept the job and avoided the relapse. I might’ve avoided a suicide attempt and a horrifying stay in a highly abusive psych ward that caused me to have flashbacks for years. I might’ve avoided a severely long recovery period during which I had to relearn how to read and write.
Next job. I worked there for five years, and I worked hard. I loved the place, and many of the clients were like family to me. My illness never affected my work. During that time I only missed one or two days for the flu. No one knew about my medical history until I released a local cover story revealing my bipolar diagnosis, and the raw truths I’d faced. And then…
Soon after, a man started harassing me at the workplace. He then e-mailed me creepy, sexual messages. All day long. He repeatedly showed up outside of my apartment building. It was clear to all those at work that this man was not well, and I knew I was in danger. I asked my boss to ban the stalker from the workplace, and my boss responded, “Are you sure you’re not imagining it?” My boss mentioned my bipolar article. After many years he suddenly doubted my level of competence, although I’d always been utterly professional and completely competent. It wasn’t until I took the stalker’s e-mails to the police that my boss finally believed me and banned the man from the workplace.
Later, a coworker had the same problem with a different man. She told the same boss, who didn’t question her at all. The boss got right on it and talked to the man, who didn’t return. While with me, there was a long period of doubt and embarrassment, with her, there was immediate support and action taken.
Then one coworker began to abuse me regularly. Criticizing and degrading me, she constantly cut me down, bringing up highly personal issues and my illness in front of clients. Thinking back to the stalker situation, knowing I would be doubted, I kept my mouth shut and did my job. I never retaliated. I never talked negatively about the person. But finally, after a year of consistent abuse, I confronted the coworker directly. I simply asked the person to stop criticizing me in front of clients and to stop bringing up my personal issues at work.
The response: “You just don’t understand my criticism because you’re too spaced out on medication.”
Actually, I’m very sharp, smart and quick-witted. I told her this. In fact, I remember unbelievable detail. School was always easy. When I talk, sometimes I pause, but that’s because I think before I speak. That’s because I am sensitive, and I care about people, not because of medication.
I finally told the owners, but the abuse got worse. Then, one owner was considering giving me an opportunity. I was excited. It had taken me years to work for it. But the abusive coworker talked to the owner on the phone, brought up my illness, and slammed my character in front of clients and coworkers. Again, my illness had never affected my job. The only reason people knew about it was because of the article I’d written. In reality, this person was furious that I might progress at work.
Other coworkers saw it all happen. Although disagreeing with the way they treated me, no one spoke up or defended me.
I had a meeting with one owner. I said, “Out of the five years I’ve worked here, and the nine years I have known you all, my illness has never affected my work life in any way, shape or form.”
The owner completely agreed with me but did not fire the person. No consequences at all. The owners did nothing. On the Mental Health Works Website, there is a note to employers: “If you hear other employees discussing the details of the individual’s illness, you need to talk to the other employees and let them know it is inappropriate. If these conversations reveal discriminatory attitudes or could be seen to constitute harassment, appropriate disciplinary measures should be taken.”
I had no choice. I left. Really, it was a forced exit. Who could take that constant abuse? They said they would call me if there was a change, if the abusive coworker left. That person finally left, but they never called me.
So whether I reveal it or not, either way, I’m pretty well screwed. Gratefully, I had a lot of outside support after leaving. I have been well, happy and thriving for a long time. I work my hardest at living life and staying well. I work damn hard. Do some people run around ill without seeking help? Sure. Many times they can’t afford it. Or stigma scares them off. And some flat-out don’t want to get well. But it makes it crushingly difficult to get and stay well, considering the walls we face.
Quiet no more
People with lifelong, chronic illnesses relapse. It’s part of the disease, and there is no cure. But when we relapse, we get scorned, abused, condemned and attacked. There should be encouragement and understanding for people with brain disorders when they relapse, not criticism, name-calling and general denigration encouraged by stigma.
If I take my medications, go to therapy and honestly tell the doctor how I’m feeling, keeping tabs on my medications, I have a good shot at staying well. Many people can get and stay well. But without critical support, it is nearly impossible. What if someone with diabetes was heading to the hospital for a checkup, and on the way, a crowd of people scorned and criticized her for being crazy? These are the hard truths we face.
Treatment works. NAMI writes, “While there is no cure for bipolar disorder, it is a treatable and manageable illness. After an accurate diagnosis, most people can achieve an optimal level of wellness. Medication is an essential element of successful treatment for people with bipolar disorder.” I am incredibly high functioning, and for the most part, the only reason people know about my illness is because of my advocacy work. Sure, I could sit back and quietly hide it, but then I think about the countless people with no support and no shot at getting well. So if I can be a voice for others with brain disorders, I will. And if I have to lose jobs, friends, boyfriends, and experience insomnia because of it, so be it. It’s too important. I can’t sit back and be quiet anymore.
I might have a brain disorder, but that’s not all there is to me. I am a writer, a teacher, a friend, a daughter, a sister. I am spiritual, intensely creative, thoughtful and unique. I like horses, crisp fall air, seeing live bands, cool sneakers, slick words, photographs and paintings that make your heart sing. I laugh and cry and hope. Damn, I dream. When thunderstorms come, I sit outside, just to feel and hear the rain for all its worth. I am a complex woman who wears baggy jeans; and through all of the fear, I know that this fight has given me more strength than I ever could’ve imagined. Every day I am well, I am utterly grateful.
So to those people in California, good luck with your donut venture, but know this: Because of the stigma that you are promoting, people are dying every day. Stigma is bullshit. We all deserve the chance to get better. And stay better. And live and work and be treated as multi-faceted human beings. We deserve support – financially, physically, medically, mentally, spiritually. We deserve respect. And care. We deserve love. We deserve to be loved. We deserve to be treated with dignity.
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