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Tag Archives: schizoaffective disorder

Who has the Authority to Write About Mental Illness?

29 Monday Oct 2018

Posted by A Journey With You in bipolar, hope, mental illness, relationships, schizophenia, stigma, Uncategorized

≈ 3 Comments

Tags

bipolar, brain disease, mental health, mental illness, mentally ill, psychiatry, psychology, schizoaffective disorder, schizophrenia], Voice, writing

I came out publicly (including family and friends) with my diagnosis three or four years ago. Since that time, I have fought very hard to try and show people with schizophrenia living lives that are similar to those without the illness. I have fought to make people like me seen as friends, partners, sisters, brothers, daughter, sons, aunts, uncles, parents, etc. And I still think we need more people with schizophrenia writing these stories. The stories of a successful life despite a severe mental illness.

I had something happen to me the other day that broadened my view and made me feel guilty, sad, and like I wasn’t telling the whole story. I met a mother online whose son’s life is nothing like mine.  Many times I have written about the mentally ill who are homeless or in prison but rarely do I write about those with schizophrenia, or schizoaffective disorder who can’t live alone, who are medication resistant, or who never get to the point of managing their symptoms.

It isn’t that I was unaware of people who need more care like inpatient treatment or a group home. I am constantly aware of that because I have a cousin who currently requires that level of treatment. But I was fighting. Fighting for stories of success, fighting for stories of hope, and fighting for stories that I rarely heard, read, or saw in books, movies, or television.

There were many times when I was frustrated by parents and adult children for writing the stories about the illness and leaving those of us with the actual illness without a voice, or way of telling a different narrative. I realize now, that there is room, if we allow it, for all of the narratives about mental illness. There is room for us to talk and hear from those in prison, there is room for us to hear from those on the street, there is room for us to hear from the children of someone with a brain disease, and there is room for mothers, fathers, sisters, and brothers to tell their stories.

All of these stories matter and can help improve our understanding of schizophrenia, schizoaffective disorder, bipolar disorder and other illnesses that impact an individual and the ones who love them. I only hope that with so many people writing about the tragedy of mental illness that stories like mine and stories like other people I know won’t get lost, or not be as valuable (because they don’t fall into our comfort zone or understanding).

I hope along with the stories of sadness, pain, struggle, and grief that stories of hope and possibility continue to find space in popular culture. For years, the heartbreaking stories have captured our imaginations and driven the cultural response; I only hope that we continue to make room for the voices of those who have lived experience because like a kaleidoscope with one blacked out spot, the view is not complete, or as colorful, or as interesting without seeing the whole picture.

Dr. Phil and Sensationalism

11 Wednesday Jan 2017

Posted by A Journey With You in articles I wrote, bipolar, mental illness, schizophrenia, Uncategorized

≈ 3 Comments

Tags

advocacy, bipolar, Dr. Phil, psychosis, schizoaffective disorder, schizophrenia], sensationalism, Shelley Duvall, stigma

*I wrote this back in November for The Mighty and even though they accepted it, it must have been cut because it never showed up there. I am posting it here to give it a home.

People with severe mental illnesses frequently are portrayed as dangerous killers, or they are portrayed as the harmless “fools” or “idiots” like in the Fisher King. There is one nice thing to say about Dr. Phil’s show that aired November 18th, 2016. The nicest thing I can say is that he didn’t go for either of those stereotypes that most movies, television shows and stories portray; Shelley Duvall did not come across as dangerous or a killer or the happy, go lucky “innocent.”  She was, however, portrayed in a way that made light of psychotic thoughts and features during a time in her life when she is in deep need of understanding and care.

The show took the path of sensationalism and did a disservice to all those who have a mental illness. Duvall, best known for her role alongside Jack Nicholson in the Shining was obviously suffering from symptoms of a severe mental illness. I’m not a doctor, but her symptoms mirror many people (myself included) who have schizophrenia, schizoaffective disorder, or bipolar psychosis.  If I had to guess, I would say that Duvall was actively psychotic based on my experiences with the condition (I have been psychotic numerous times and her thought pattern, paranoia, etc. closely resemble what I went through).

I am disappointed and angry that McGraw didn’t take the high road and interview someone with a severe mental illness who is an advocate and could have gotten through an interview without falling into some of the most serious symptoms displayed by people with schizophrenia or other disorders. For instance, I suffer from symptoms every day but could have talked my way through an interview without disclosing any delusions, hallucinations or conspiracy theories. The same was not true of Duvall. Duvall mentioned a device implanted in her leg that causes her to worry. She also said that Robin Williams, who she acted within the movie, Popeye, was not dead (Williams committed suicide in 2014) but was “shape shifting.” And she claimed that the Sheriff of Nottingham was out to get her, and frequently mentioned people trying to hurt her in bizarre ways.

I know the things I wrote in the last few sentences seem kind of eccentric, harmless, and maybe even fun or goofy, but they are symptoms of a serious illness, and there is nothing harmless or humorous about them. If Duvall is psychotic, she may also be hearing voices (during the interview she mentioned a man that is hurting her that may very well be a voice that she hears). Hearing voices is a phenomenon that can be upbeat one moment and terrify the next; it can be extremely uncomfortable to those who experience it. At a minimum, Duvall deserves our respect, compassion and empathy and McGraw made her more of an object of sensationalized quirkiness than a woman who needs intervention, care, and long-term treatment.

Not only did the Dr. Phil show harm advocacy efforts towards giving a balanced and fair view of mental illnesses, but it may also have harmed Duvall as well. If Duvall can get medications that clear up her symptoms or at least make them manageable (knowing the difference between reality and delusions) then she may very well be embarrassed or shamed by that interview. In her vulnerable state (which should never have been made public) she may have opened herself up in ways that she normally wouldn’t have, and that could cause her further suffering.

Like all marginalized groups who suffer from popular stereotypes, mentally ill people long to be seen as we are and not as caricatures of our symptoms, sensationalistic representations of our illnesses, or in a case of extremes. For many of us, we look a lot like everyone else when we have proper treatment, but darn, that just isn’t as interesting and doesn’t sell advertising.

A Project for People with Schizophrenia or Schizoaffective Disorder

16 Thursday Jun 2016

Posted by A Journey With You in schizophrenia, Uncategorized

≈ 6 Comments

Tags

interview, mental health, mental illness, oral history, project, research, schizoaffective disorder, schizophrenia], stigma, stories, The Schizophrenia Oral History Project, TSOHP

Last week I was contacted by Dr. Tracy McDonough from The Schizophrenia Oral History Project (TSOHP). She wanted to know if I was willing to tell my life story. She told me that I could talk about my illness, or I could talk about anything I wanted people to know about me. The interviews are then posted on their website for other people to hear. I agreed to do the interview.

The call (recorded) lasted for just over an hour. Tracy asked me very few questions (just to keep me talking) and told me before we started that I didn’t have to answer any of the questions I didn’t feel comfortable answering. During the whole process, Tracy was respectful and sensitive.

Of course, I started the interview out with, “I am someone’s baby.” I did this so everyone who listens to the recording would know I came into the world the same way they did – we all have a similar beginning. Isn’t it important to recognize each other’s humanity above all?

If you are interested in being a part of the project, you can find out more at their Facebook page, or on their website.

If you do end up contacting them, please let them know that you heard about their work from Rebecca. If you have schizophrenia or schizoaffective disorder, I hope you will consider participating in the project. Our stories, our real life experiences, our ups and downs and all around are what help to combat the stigma. As I so often say, “We are more like you than different.” It is an important message and one I hope you will share with others about your life.

 

 

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