Saturday, May 03, 2014

A Mark Of Disgrace (My commentary on stigma)

Since this month is Mental Illness Awareness Month I thought I'd write a little about stigma. Out of curiosity I looked up the definition of it. I have never done this before because I knew what it meant as it related to mental illness. I did find, though, that the definition as it stands is pretty harsh sounding and made me then think about how harsh it really is when it's related to mental illness. Here is the definition:

a mark of disgrace associated with a particular circumstance, quality, or person.
"the stigma of mental disorder"

synonyms: shame, disgrace, dishonor, ignominy, opprobrium, humiliation, (bad) reputation

What I read, the word "disgrace", made me sad. So are people saying it is a "disgrace" to have a mental illness? Really? And the synonyms "shame", "humiliation", and (bad) "reputation", so we are supposed to feel shame, humiliation, and have a bad reputation because we have a mental illness? To me, this is an outrage. It is so hard for me to comprehend that our society, in this day and age where we have the internet (for example) and can educate ourselves, casts stigma on mental illness at all. Haven't we moved beyond that as a society as a whole?

The obvious answer is "no, we haven't" because it is alive and well even right here on my blog. I am constantly amazed to discover that I do, in fact, have many readers on my blog but those people who have schizophrenia or who care for someone with schizophrenia feel they must hide in obscurity because of what their friends and even family would think. What is wrong with us as a society that we force people to hide, to keep quiet and keep their heads down, people who are good people, who love, who work hard, who give their lives for their loved one with schizophrenia and who have to actually live with this illness? I want to shout from the rooftops (I'd climb higher if I could) that all of us deserve respect and compassion and tolerance. It is a travesty that we have to hide a large part of ourselves from the world because we are afraid of the stigma.

On New Years Day 2013 Thomas was diagnosed with schizophrenia just 2 months and 3 days. I was new to this illness apart from what I had studied in college. I was new to how it affected me personally. I had been out in my town, in my neighborhood and I had thought about telling my neighbors but then I thought twice and stopped myself because I knew that their judgment and disdain would be palpable and Thomas and I would end up living in a prison of sorts because we feared that judgment and those looks. On New Years Day, though, I made a resolution to myself and promised myself that this was one I was going to keep. I wanted to speak out, I wanted to tell the truth, I wanted people to know that schizophrenia touched our lives and I wanted all of this to be a badge of honor that both Thomas and I wore proudly. He was sick and nothing was going to change that so in the face of that, the only choice I saw was to give meaning to it all and try and make a difference by changing minds about this illness.

Before I began writing, I went into schizophrenia chat rooms and I asked around about what people thought of me doing this. What struck me most was how much these people stigmatized themselves and their peers! Even they saw themselves as people who needed to hide and who felt anger at someone like me who wanted to speak out about it. Many told me I was wasting my time, that people wouldn't care and that I would run into a lot of opposition. I boldly stated that I was going to go through with it anyway and I could feel the proverbial door slammed behind me as I went forward with my plan.

What they didn't know was that they were the ones that fueled my fire in the end. That they would look at themselves and their peers in that way was just the icing on the top of this whole stigma fueled movement against people with mental illness. So, I began writing. I wrote just a little at first, I admittedly felt some of the fear of what I might run into by doing what I was doing but slowly but surely my blog gained followers, I gained support and as a result my voice became louder, less timid and ultimately more confident. The more I wrote the less afraid I was of the stigma. After all, the world isn't black and white, not everyone is a hater and even better because the world isn't black and white, I discovered how many wonderful, educated (or willing to educate themselves about this illness), supportive, compassionate people there were out there in the world. I wasn't alone. Not by a long shot and as time went on I greeted more and more people at the door to my blog and welcomed their light into mine and Thomas' life.

I like to think, no I believe I have come a long way from those proverbial low-lit, angry, hidden chat rooms, from worrying about what Thomas' high school would think (I felt sure--at first--that they'd hear "schizophrenia" and automatically assume Thomas was going to show up there someday with a gun and wipe out his senior class) and from worrying about what people in my town would think. What I have found on the other side of this worry about stigma that is attached to mental illness and especially schizophrenia is that there will, of course, always be people who are close-minded and uneducated and are quite happy in their narrow little world but there are many many more people who either have a mental illness themselves or know someone with one and best of all there are people who know nothing at all and are curious and open to listening to me educate them about schizophrenia. So many just want to understand the experience of schizophrenia, what the meds are like, how they affect Thomas, what he deals with inside his head and so much more.

The lesson for today and from this day forward is just this. Find your voice, even if it's small and whispers. Find it and start talking. Tell someone in your life about schizophrenia that doesn't know about how it affects your life. I can promise you, because I have lived it myself, that someone will listen and that someone will care and that someone, somewhere down the road will be your best advocate even if they only go forth into the world and change one mind themselves. That is all it takes. One voice and with that one voice you can change the world.


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