We wear the mask: we need to remove it now & share our secrets

We Wear the Mask
We wear the mask that grins and lies,
It hides our cheeks and shades our eyes,—
This debt we pay to human guile;
With torn and bleeding hearts we smile,
And mouth with myriad subtleties.
Why should the world be over-wise,
In counting all our tears and sighs?
Nay, let them only see us, while
We wear the mask.
We smile, but, O great Christ, our cries
To thee from tortured souls arise.
We sing, but oh the clay is vile
Beneath our feet, and long the mile;
But let the world dream otherwise,
We wear the mask!
~Paul Lawrence Dunbar
http://www.potw.org/archive/potw8.html

Audre Lorde wrote “your silence will not protect you”. Adrienne Rich wrote, “silence speaks louder than words”. These are quotes that have come to mind lately, as I have been thinking about what would most benefit the world in regards to mental health awareness, and research and finding cures for mental illnesses. My belief is that the solution lies in people like myself sharing our secrets. If you have a mental illness, or know someone who does, you should share your secrets.

Schizophrenia exists because of silence. Because of the shame that enshrouds people with this illness, many do not disclose they have the illness to the majority of the people they know. Many others are not diagnosed at all in the first place, so no one knows they have the illness. Because of this, the average person believes he/she does not know anybody with Schizophrenia, and are certain that they, themselves, could never develop the disorder. Since they do not believe the disorder could ever affect anybody they know or care about, and never has, they do not care whether or not research is done on this illness. It’s not an issue that hits close to home for them; it’s not a priority. They don’t know that millions of people have the illness. They don’t know what the illness is, because they are not educated about mental health at all. And because of that lack of knowledge, the silence continues, and the silence, in turn, guarantees that lack of knowledge will continue.

People do not write letters to pharmaceutical companies, or to the Senators and Representatives in Congress about issues that they do not believe are important. People do not educate themselves or others about issues that they don’t think are important. Thus, ignorance leads to a lack of funding for scientific research into the illness. Because the illness is not considered a priority by the majority of the population, there is not enough research being done about the illness. There is no cure. There are medications, but for some people none of them work, and/or the side effects are unbearable.

Because this illness is not considered a priority, there are not enough support systems in place to help people who have the illness be able to function or cope. People with Schizophrenia need therapy, structure, assistance with housing and income most of the time. They need guidance, a person who they can trust to turn to, and they need care. They need to see psychiatrists regularly, they need the money and/or insurance for the medications which are heinously expensive, they need people who can do reality checks with them to help them realize when their thoughts are delusional. They need encouragement and hope. None of these needs are met when there is no funding for them because the population does not believe the illness matters, and people do not believe they themselves could acquire the illness.

Share your secrets.

I have secrets. I put on a uniform to go to my job. It includes neat, clean clothes, a clean and well-fed body that has had enough sleep and proper medication, and a smile. Nobody can easily see through this uniform to find the person beneath me. The uniform hides the years that I spent unable to go to any job, even a part time job, the many times when I did not have the energy, desire, or clarity of thought to be able to do things like clean my clothes, take a shower, and get up and get dressed in the morning. This uniform denies the fact that I might even, when wearing the uniform, be thinking delusional thoughts and experiencing auditory hallucinations.
People who see me in this uniform see what I have chosen to let them see, and nothing more. They do not see the disastrous inside of my car or my apartment which I sometimes cannot organize and clean because my brain does not function like a healthy brain. Coworkers do not know that I experience auditory hallucinations on most days that I am at work, and sometimes they torment me all day long. Even while I am wearing that required smile on my face so no one has to know.

They also do not know that this part time job is the only kind of job I can handle right now, because I do not always have the clarity of thought to do tasks which are more complicated. They do not know that I would love to work full time and make more money somewhere, but that is not possible for me right now and has not been possible for a long time.

People at work don’t know that I’m lonely, and I have only one friend who I ever spend time with. They don’t know I can’t make friends easily as I have to keep my guard up all the time to avoid rejection like the kind I’ve lived through before, and they don’t know that I’d like to be friends with them but I can’t conceive of a way to make that happen. I don’t believe they would ever want to be my friend. I am, sadly, marked with a brand that society burned into my flesh, the mark of the proverbial Beast, the label, "psychotic". The label, "Schizophrenic". That damn label you can’t polish up so that it sounds somehow harmless or innocuous. It’s like being labeled with AIDS. I understand the kind of shame that keeps a person from admitting to others that she is HIV positive. I am the kind of person who hates to admit to some people that I have Schizophrenia.

To complicate things even further, the silence that perpetuates this illness is fueled by the illness itself. Most people who develop psychosis do not know that they are psychotic. That is par for the course. Once you realize that you are psychotic, you are no longer considered to be psychotic by the psychiatric professionals. The reason people do not know they are psychotic is chalked up to a “lack of insight” in the medical community. However, I would argue that there is more to it than the fact that the illness convinces a person she does not have an illness. If you do not know what the illness is, in the first place, to understand the signs of it, how on earth would you know that you had it when it occurred?

If I had breast cancer, there are ways I would likely find out. When I go to the grocery store, there are shelves stocked with pink items – all sorts of items – created to further breast cancer awareness. When I go to my gynecologist, she checks me for breast lumps and teaches me how to do so myself. When I turn on the television, I see commercials about the Three Day Susan B. Komen Foundation walk for breast cancer awareness. When I go to a department store, I see pink earrings and bracelets with the breast cancer pink ribbon on them.

Now, I understand that breast cancer is a serious illness. I also know that it is not as common as serious mental illnesses are. So what I want to know is, what color is our ribbon, and where the heck is it at? At what store can I buy one on a coffee cup or a pair of earrings or a t-shirt? Where are the commercials about the marathon we’re having to raise money for Schizophrenia research? Where are the famous actors, actresses, musicians, government officials and other celebrities who have written books about their mental illnesses and are doing public service announcements about mental illness (not even specifically Schizophrenia, but ANY mental illness)? Where is the money from research going to come from when nobody is talking about it, or mobilizing to raise awareness?

See, if a person has never learned the hallmarks signs and symptoms of Schizophrenia, how would she recognize that her mind was developing psychosis? If a person is never routinely checked for mental health problems, then how are they to be discovered? If a person does not hear through society that this is an important illness, how does she know to be on guard for it? How does she even know it exists?

When you have delusional thoughts that tell you the CIA is after you, the mafia is after you, your coworkers are conspiring against you, someone is trying to poison your food, etc, how are you to know “this is a sign of Schizophrenia”? When you start to hear people talking in doublespeak, saying two things at the same time, how are you supposed to know “this is an auditory hallucination”? When you see a bat flying around your bedroom and attacking you in the middle of the night, how are you supposed to know, “this is a hallucination”? If you’ve never heard people tell you these things can and may happen to you, then how are you supposed to identify them? All of these things happened to me. And I can state that, because I had psychological testing done when I was a teenager and in a hospital for anorexia, I knew that thinking the CIA was after you was a sign of mental illness, and I remembered that, years later in my twenties, when I began to think the CIA was, indeed, after me. I knew, with some part of my mind, "this is a sign of a problem". And one of the ways that I convince myself I still need medication and I have this illness, is the fact that I know that delusional thought is a symptom of this illness. I know that this illness is real. It is a misconception that no testing can be done to find a mental illness. There are psychological tests that have been done for years to determine psychosis.

The fact of the matter is, if this was any other kind of illness than a mental illness, there would have been more research done by now, and there would be more funding for research, and there would be more viable treatment options, such as a cure. I truly believe that without the vicious circle of shame and silence which enshrouds Schizophrenia, there would be a cure for it by now. It is 2010 and we still can only come up with a medication that only lessens the effects of a mental illness, if you’re lucky and it works for you, and you don’t mind taking it even though it makes you gain 100 pounds? What the hell is that about? It’s about shame. It’s about silence. It’s about denial. It’s about the lies people tell themselves. The last thing a person wants to lose is her mind.

When I go to the community mental health center each week, I see people who are all wearing their proverbial uniforms as well. I see the mechanic with his grease-stained shirt who comes up with a lie to explain to his boss why he has to come into work late when he needs to go see the psychiatric ARNP. I see the mother carting along two children, a diaper bag, and the fear that someone might think she is an unfit mother and take her children away because she’s psychotic. I see a teenager, newly diagnosed, in gothic gear, looking as cool as he can, who never tells his friends he gets an injection of Risperdal every two weeks to survive. I see the elderly woman who is talking to the voices in her head and has no one who talks to her in her life, or listens to what she has to say.

I see the overweight person who people think of as “fat”, first and foremost, when they meet her, because people don’t know she was thin all her life until she had to take a psychotropic pill that made her hungry all the time, tje 29-year-old with scars on her arms from cutting herself who people think is self-absorbed, “emo”, and pathetic, because they don’t know that she is tormented and only doing what she thinks she has to do to survive. I see brave people, whose bravery goes unnoticed. I see veterans of a war that was never televised. I see the truth that our society does not want to see.

If these people could take off their uniforms, and show their true, raw selves to the world, the world would know that anybody, from any walk of life could develop a mental illness, that you can’t tell if a person has Schizophrenia by looking at her, and that the illness has no mercy and spares no demographic.

In short, if people could remove these uniforms then there would be a worldwide reality check, and there would be knowledge, and there would be a cure.

But this is a mental illness, and a uniform is the social dress code to cover it up, because unlike all the conspiracies those of us who are psychotic believe in, there is a very real conspiracy of silence around mental illness, and it needs to end. It needs to end now. Share your secrets. I strive for the bravery to share mine. It is the purpose of my blog. Perhaps someday I will take off my uniform and tell a coworker about this illness.

In the mean time, there finally are public service announcements with well-known folks in them, created to raise awareness about mental illness. To find out more about the Bring Change 2 Mind campaign, go here, and you can also join their cause on Facebook to help spread the word about this important work.