dear doctor...

Today I was thinking how I would approach a psychiatrist if I didn’t have a good working relationship with him or her. This is what I came up with.

Dear Psych Doctor,

It’s my understanding that you have spent many years in college learning theories about how the brain works, theories about jumbles of symptoms and the categories that encapsulate them. You are undoubtedly an expert on theories about how to lessen the symptoms of mental illness. I respect where you are coming from. I recognize that you are less concerned with how these symptoms impact the daily living for people struggling with them. As I understand things, you are more concerned with reducing the existence of these symptoms. The impact of these experiences to hour way of thinking is enter left go the therapists, social workers, peer specialists, and do on.

Sometimes I wonder though if this kind of compartmentalization of the healing process might be counter intuitive. I mean, I know how a person’s symptoms impact the quality of their life could play a significant role in how those symptoms are treated. So, for example, if I am dealing with the debilitation effects of major depression and one aspect of it is related to my obesity, then it doesn’t make a lot of sense to prescribe me an antidepressant that causes significant weight gain. Yes, hypothetically I could exercise regularly and eat well to counter the effects of the antidepressant, but how likely am I to do that if my pattern is to sleep 12+ hours a day and eat carbohydrates and sugar?

I also recognize and respect that there are times when you are tasked with complex responsibility to bring a person out of a dangerous place of crisis into a more level place of stabilization. I know that there are times when this is a matter of life a death for the people you work with. As a person who has been diagnosed with a mental illness I have been in that predicament. However, once stable how long should that level of care be maintained? At what point should people be supported in moving past crisis and back to living, back to thriving? Who should broach the subject of pulling back on the meds? When do we start the conversation about adjusting the dosage to fit the situation and address the trigger of the crisis?

Of equal importance, who is responsible for educating your clients that they have a say in their treatment? Who is responsible for teaching them how to respectfully talk with you about what they want for their lives and how what you do with them impacts their life goals. Do you tell them they have a choice of co you simply write them a script, check for medication compliance and send them on their way? Do they have time to ask questions or process what you’ve gold them of are they ushered away after 45 minutes of medical interrogation where you type their responses into an electronic chart rarely looking up at them?

What I’m getting at is, that as a client of mental health services and as a peer specialist in the mental health community I see a gap in services. This gap has to do with underutilized opportunities. In this field we can actually assist individuals in transforming their lives into something extraordinary. We work with people who have lost hope and purpose. Often they have lost choice. They are told where they can live, what they can accomplish and discouraged from living a life with purpose. 

We have the chance to empower them to live their one and only life exactly the way they want go. So I say let’s make the most of the time we spend with them. Even if it is only 15 minutes every 30 day lets beef up that 45 minutes and make it meaningful. Let’s look people in the eye. Let’s put a face to that name. Let’s identify one trait that makes each person unique so that they are more than a medical chart filled with forms, demographics, problems, etc. We are do-gooders, why not embrace that? Together we can have a great impact on the lives of the people we serve. We just have to adjust our thinking and remember that we are here for service to others. We need to remember why we got into this field in the first place, tap into the ideals that sparked the fire in us to want to help, to want to empower, to want to serve.

but you don't seem crazy!

Transparency is a double edged sword. Once a person comes out as having a mental health “challenge” or “difference” or “illness,” there is no going back. There is no hiding behind descriptions like eccentric or quirky. People will judge you and place you in a box that limits you to your diagnosis. Even if never spoken aloud, there are some who will always think “Well, you know, she’s a schizophrenic.”  So that is a very real risk we take when we acknowledge publicly our challenges with a disorder of the brain. And to be sure there is a double standard because no one ever says “Well, you know he’s a diabetic or he has irritable bowel syndrome and that’s why he thinks that way.”

People have told me that I am unique for someone with a diagnosis of mental illness. I didn’t hear this until I started going public with it. For a long time only my family and a few close friends knew. But then I decided to become a peer specialist and the cat was out of the bag. So, why am I unique? Well, clinicians have labeled me “high functioning” versus “low functioning.”  I’m not okay with those terms. They are divisive like the terms “educated Black woman” or “urbanite.” Why can’t we just be people? Maybe it’s because of the stereotypes that are perpetuated by the media, but many picture people with schizophrenia as living under bridges, poorly groomed and talking to themselves. People who live with mental illness live in a variety of circumstances. We are not the convenient two dimensional characters you see in movies and televisions shows. We are not all violent and a threat to society. We do not all need to be locked away or warehoused. We are just people.

This stereotyping doesn’t just occur outside of the peer community. There is in fact an internalized stigma within the peer community that is rarely discussed. The response I get from the peers I work with when I disclose is priceless. When I first meet them, I tell that that I am a peer specialist and the role peer specialists can play in the recovery of an individual. I tell them that I too have a diagnosis. That’s when their ears perk up and they want to know what I’ve got. When I tell them, the first thing they say is “But you don’t look crazy.” Believe it or not this is a good thing because I have just challenged their stereotype of what it means to have a mental illness. I have just challenged their image of what a person with schizophrenia should act like. I have broken down a wall. It’s doubly awesome if the person has schizophrenia too, because my disclosure plants a seed in them for what is possible.

Apparently I am also unique because I am transparent. Not everyone goes around disclosing their diagnosis. In my cultural community we have a tradition of not “claiming” adversity or in this case a diagnosis. And I don’t claim schizophrenia, but I respect and acknowledge its place in my life. After all, I’ve tried ignoring it and that got me hospitalized, jobless and almost homeless. So, now I have a healthy respect for it and give it the attention it needs so that it does not stop me from living a life of my choosing.

I just don’t feel the need to hide this part of my life from anyone. Don’t get me wrong, I don’t walk around with a t-shirt on that says look at me I’m mentally ill. However, I will disclose at the drop of a hat if necessary. What I mean is, there are times when my disclosure is not about me getting something off my chest, it’s about educating someone; it’s about fighting stigma. When I meet people in any area of my life and s sideways comment about people with mental illness comes up, I have been known to say “As a person with schizophrenia, that hasn’t been my experience.” The whole dynamic of the conversation changes from ignorant gossiping to embarrassment to meaningful dialogues. To be sure it’s awkward, its painful, its uncomfortable, but it’s necessary if we are going to change the way we think and communicate about mental illness.

This process of educating people is not new to me. It reminds me of my time in college in western New York in the late 1980’s. I went to a small state college in a small college town that was very unfriendly to African Americans. It was culture shock for me. I was naïve and thought that racism was something that happened before I was born. I learned pretty quickly that it was alive and well in the hearts and minds of my white brothers and sisters. So, I found myself having to help them unlearn some heinous untruths about me and my people. It was (and is) awkward, painful, embarrassing, and uncomfortable-but necessary for meaningful dialogue.

These dialogues about mental illness (and race) are not easy. They are not for the faint of heart. These conversations are for those of us who refuse to live in the shadows; for those of us who believe we have the right to thrive in this world just like everyone else. Don’t let the media fool you, don’t be discouraged by the way we are portrayed in the news. We really are trailblazers. Every time we get up and live our lives out loud we are destroying stereotypes and burying stigmas.  

creativity & madness

I don’t know what the relationship is between creativity and mental illness. I can only speak from my experience. What I do know is that I have been diagnosed more than once with a mental illness and I have always been very creative. Visual art and creative writing have been my refuge, my saving grace and early on the only way I knew how to communicate with my higher power. My creative endeavors have given me insight and self-awareness that no therapy has every come close to tapping into.

As a young child in the 70’s I drew big breasted women with afros, hoop earrings, bell bottom pants and a-line dresses. I drew what I knew. I drew triangular houses with chimneys and cookie cutter apple trees- though I’m not sure I had every actually seen a real apple tree. Nonetheless, I colored in brown trunks, green leaves and red circles. I made up complicated narratives that cast me as a miniature person, about the size of a mouse, in an oversized world of giants. In my world there was always at least one imaginary friend who I openly talked to incessantly.

Growing up on the eastside of Buffalo, New York on the outskirts of an area called the “fruit belt” provided me with a lot of source material. As I moved into my preteen years, I had come to be known in my family as the “sensitive” one-code word for “troubled.” But the effects of that label and the subsequent treatment were softened by the fact that I had art in my life. I had an escape. So at the age of 12 I knew this art thing was important and I knew I needed a teacher. My school art teachers had unabashedly encouraged me to find a new hobby as they had no confidence in my abilities. I found an awesome teacher in an unlikely and amazing place.

There was a unique community art school in the fruit belt called MollyOlga Neighborhood Art Classes. It was founded in 1959 by my teacher of 10 years Molly Bethel and it provided free classes in painting, drawing, photography, sculpture, clay, etc. for all ages. I met the most eclectic group of artists there of all ages and races. This was unique because Buffalo was and is still a very segregated city. E.B. was one of the painters I met there who was about ten years older than me. He was something of mystic and always had a wisdom nugget for me when we saw each other. And his laugh was contagious, he always had some silly observation for me to chew on. An extremely talented and self-directed artist he would easily have been labeled as having schizophrenia by my colleagues today.

Then there was S.R. She was multi-talented, could move so easily from painting to clay to photography and produce beautiful works of art. She literally could do it all and had incredible business savvy to boot. She was my friend and my hero. S.R. had an explosive personality and her mood could turn on a dime. She lived and loved passionately. You could be sure that if she was your friend, she was your friend for life. Several of my friends at MollyOlga struggled with extraordinary experiences like paranoia, fear, uncommon beliefs, voices, visions, vivid dreams, etc. and they were sometimes expressed through their art. Back then I didn’t have a language to describe their struggles. And if I am to tell the whole story, there was a great deal of self-medication going on through the use of alcohol and cannabis. I didn’t judge them then and I don’t judge them now. They did the best they could with what they had, but their choices took a toll on them and many are not here today.

MollyOlga was a true to life melting pot of multi-generational and racially diverse people who were beautiful, strange, talented and loving. They were ride or die friends who would give you their last if you needed it. I could not have ended up in a more nurturing environment. It was exactly where a “troubled” creative person could grow, learn and thrive. It was a safe haven, a judgment free zone akin to the atmosphere of today’s peer run wellness centers in Georgia.

Truth be told, I had some uncommon beliefs about my art. There were times growing up when I thought I had a special relationship with Vincent van Gogh. This was long before I was diagnosed, before I began to understand that I experienced things that others didn’t and before I knew that people thought that van Gogh was crazy. I just thought we were kindred spirits tortured by our deep thoughts, intense emotions, and compulsion to make art. Contemplating his challenges back then as a teenager I earnestly wished I could have lived when he lived. I was convinced that I could have comforted him and shown him another way. Even then I was thinking like a peer specialist.

Today I have a hard time describing how my mental illness has played into my art making and vice versa. I guess I just know that it has. More often than not my art making process is like a delusion that I totally buy into and act on until the realization that it isn’t real to anyone else hits me, then I stop. When I stop believing, the painting is finished and I move on to the next piece of art work. So, I often can’t explain what my paintings are about. I just don’t know or remember. I can talk to you about color and composition, about texture and line quality, even about tension and dynamic movement. However, the narrative is left up to the viewer. So, the question becomes, is this a product of a creative process or psychosis? I just don’t know and frankly, it doesn’t matter to me. What does matter is that I keep making paintings because it feeds my spirit and keeps me on balance.

  

us vs. them?

As quiet as it is kept, there is a tenuous alliance between the peer and clinical communities. I’ve observed a snarky little attitude of us versus them. This doesn’t make a lot of sense to me, a peer living on both worlds, because I believe our goals are the same. To be sure, we go about it differently, but I firmly believe our ultimate goal is to empower, engage and support the people we serve. We are both committed to service to others.

It seems there is confusion and ignorance on the part of clinicians about what peers do with the people we work with. Likewise, there is a culture of distrust of the clinical community by peers. This distrust appears to me to stem from first hand experience of peer specialists as clients of clinicians. Just about everyone I know in the peer community has a horror story about their treatment in the system by clinicians and mental health workers.

Although these accounts of mistreatment, disregard, and excessive force are in and of themselves traumatic, I don’t think they are the rule of thumb. As I have said in past posts, people who choose to assist those of us with mental health differences are “do-gooders.” They have good intentions. I know this because I spend 40 hours a week with them as a peer specialists and several hours a month with them as a client. I simply don’t believe that clinicians set out to harm or re-traumatize their clients. Although, I know that it has and still happens.

Please don’t misunderstand me, I know there have been too many instances of forced treatments, restraints, seclusion, and over medication. What I’m saying is that, as damaging as these actions have been and are, I don’t believe they are a product of malice intent. I think sometimes clinicians overreact and are zealous. From my experience and from what I have observed, I believe individually they want to help. Many times they do help.

The confusion and distrust that clinicians sometimes have for peer specialists stems from ignorance of what exactly we do. We are not babysitters. We don’t coddle other peers. We’re not even friends to the peers we work with on a professional level. We are role models of wellness and recovery. We teach, encourage and empower. We a living examples of what it means to thrive with a metal health diagnosis. We are the poster children for a life focused on wellness, not illness. This is a powerful reality because we are living breathing proof that the stigma of mental illness is based in untruths. Our existence is proof that the stereotypes are not real. We are proof that it is possible to live a life of one’s choosing and have a mental health diagnosis.

So, I think the solution to the ignorance and distrust is dialogue. We need to come together regularly and have some meaningful conversations about what we are trying to do and how we are trying to do it. And, I think this is happening on a small scale. However, there is a needs for forums that give us an opportunity to come together and compare notes. Traditional medicine and therapies work for many. I’d like to learn why and how from the horse’s mouth. Peer support works but how and why? It would be awesome if we could take the best of both worlds and combine them to support the people we are trying to assist in taking back their lives after a crisis. As it stands, peer specialist do their thing and clinicians do their thing, but there is little intentional collaboration.

In a perfect world, I envision a world where the two come together in a more deliberate manner to offer services. The sense I get is that this is happening almost accidentally, but not intentionally. This needed collaboration is not yet a part of the institutional culture of organizations.

I welcome your feedback and experiences. Weigh in on this and tell me what you think.