Monday, May 31, 2010

Free to Be You and Me: Celebrating Freedom



Today is Memorial Day, although it's not actually "day" right now, it's 3:25 AM (insomnia has been a big problem again lately). This is a day when Americans are supposed to remember the soldiers who have defended our freedom in the United States for all the years it has existed. So, on the topic of freedom, I thought I'd write a bit about the freedoms I am grateful to have. Earlier tonight, I was reading a post at Polar Bear's blog about feigning happiness for the benefit of other people. This brought to mind two recent, excellent books I have enjoyed discovering in bookstores when I get chance to stop in them and read for a bit. One of them is Bright-Sided: How the Relentless Promotion of Positive Thinking Has Undermined America by one of my favorite authors, Barbara Ehrenreich. The other book is, Bluebird: Women and the New Psychology of Happiness by feminist author Ariel Gore. (Note: Barbara's Blog has an interesting article on one of the topics this book of hers covers; you should check it out).

The premise of each of these books is basically that our society has placed such importance on the expression of happiness and fulfillment, that people who are not feeling particularly happy or fulfilled are looked down upon, and people who are going through issues like serious illnesses are made to feel like their thoughts provoked their illness. You may have seen the film, The Secret, or read the book, which came out a few years ago. There were some really inspiring words in that video, and it did make me think that perhaps I need to pay more attention to the kind of vibes I'm sending out into the universe.

However, the problem with this kind of film, or book, is that it can have bogus, unscientific information, and places the blame for all of life's woes on the shoulders of whoever is experiencing a hard time. All of those Deepak Chopra books that have made him so much money are not my cup of tea, because I find in them some messages that are ridiculous and cruel, such as the idea that if a person gets cancer, that person just wasn't thinking rosy thoughts enough. That person frowned too many times. That person forgot to give blood at the blood bank, didn't bring brownies to her new neighbors, left the dishes for somebody else to do them.....so now she has lymphoma. Ok, the books don't put the two together quite that succinctly, but this basic thought is what I despise about Deepak Chopra's books, and other books, like The Secret. Both Gore and Ehreinreich wrote about these types of books in their recent books mentioned above, which I highly recommend.

Further, while I am a proponent of medication when it's necessary, Gore's book discusses how much antidepressant medications have been marketed and doled out in recent years, and correlates that with the entire cult of required happiness. She writes that when antidepressants were first invented, they were used primarily by women, were tested on in women only, and depression then took the place of "hysteria" in the medical books. Think for a moment: how many people do you know who are taking or have taken antidepressants? I know many. For some of those people, the ones who have Major Depression, Bipolar Disorder, or a similar condition, those drugs are certainly very appropriate and even necessary. But for the other people, those drugs are a synthetic smile in a bottle. A culture that places so much value on the expression of happiness and is also blatantly sexist is a culture that will not allow women the right to express "negative" emotions at all. Or men, for that matter. How many times have we heard that men never cry?

What I'd like to point out here today, this day of valuing the freedom fought for by so many military service folks, is that we have the right in this day and age, and in this country, to refuse to place the permanent smiley face doled out at Walmart on our lips. We don't owe other people a smile. We don't owe anyone the suppression of our emotions, the hiding of our medical illnesses, the silence that ensures the continuation of ignorance and stigma. Rather, what we do owe both the world and ourselves, I think, is acceptance of all human beings, within this great melting pot we call America. And that means that when someone has an illness we allow her to be upset about her illness and not say to everyone around her that she's perfectly happy and there is nothing wrong whatsoever.

Obviously we don't want to live in a culture where everyone is always discussing their problems at length all day long. But that extreme is not what I am talking about; I am merely talking about allowing people to be themselves, to express themselves, to share their thoughts and feelings, and to not make them feel guilty for getting cancer or Schizophrenia, or for mentioning to someone that they are having a bad day. This is a basic human right, to be able to be ourselves, and in this country where we are grateful for the protection of our rights to life, liberty, and the pursuit of happiness, where individual rights are valued so highly by our government, it is just plain silly to pretend that everybody is content and happy at all times. The world, my grandmother always said, takes all kinds. And that includes the kind that are having a bad day, or facing a horrible illness, or going through a divorce, or living in poverty or homelessness, etc.

The freedom I'm grateful for because freedom's more than "just a word for nothing left to lose":

  • I am grateful to live in a country where I have the freedom to express myself about such matters as those above.

  • I am also grateful to have the freedom, right now, from auditory hallucinations. Though I have always had them even while the medications were working, for the past couple of months I have had days, even weeks, where they do not occur, which is absolutely wonderful. It is quite liberating when your mind is not held hostage any longer.

  • I am also grateful for the medications that gave me that freedom, and for the freedom to obtain those medications.

  • I am grateful for the freedom to exist, whole, with flaws and all, without having to bind my feet, go through female circumcision, have unwanted pregnancies, or be forced to where a Burka.

  • I am grateful that my life is no longer eclipsed by the forceps of an eating disorder. Anorexia was a total prison of the mind that I lived in for many years, and it is absolutely wonderful to be free from that.

  • I am grateful for the freedom of the First Amendment of the United States, which protects my right to write.

  • I am grateful for the freedom to express my emotions, whatever they may be, and to cry, if I need to cry, frown if I need to frown, laugh when I want to life, and smile as I please, which is much different from responding to the adage that a girl should "smile pretty" at all times.

  • I am grateful for the role models I have in the feminist movement and the female trailblazers who created the path to freedom for women.

  • I am grateful for my cohorts in advocacy for mental illness.

  • I am grateful that you are taking the time to read this post.
In the future, I hope to have the freedom to live life without the hindrance of a psychiatric illness, or a physical illness, or tons of medications that must be taken on a daily basis. Also, I'd love to live in a country with a woman president and equality for women and girls, so tat we have the freedom to do whatever we like, without the hindrance of sexism. That would be ideal. For now, I'm happy for the freedoms I do have.

I hope you are feeling as well as possible and have some happy moments in your day today. Happy Memorial Day!

Wednesday, May 26, 2010

Obsessive Thoughts.....12345678










Note, before you read this post:


In the past I've talked about the obsessive thoughts I had about a particular guy. This post is not about that. I actually deleted old posts about him a long time ago, as I was so humiliated by that obsession, and there are not many mentions of him anywhere on this blog now. But I will mention that those thoughts are one type of obsessive thought that plagued me for 12 years.





Now, onto the post:

Lately I've had this TMJ pain. A spot near my right ear and my jaw gets hit with this throbbing, incessant pain, so that this spot hurts, then the pain stops for a second. Pain comes back, pain stops, and the pattern goes on, sometimes all day long. I take Naproxen and just deal with it, but it's really annoying. I mention this because there's a similar problem with my thoughts.




Like a hammer hitting me in the head, over and over, nailing them into my brain, obsessive thoughts plague me. They have always been there, to some degree, for many years, but particularly since I developed psychosis, though the thoughts occur even without psychosis. I mean, I can be completely free of hallucinations and delusions, which I almost am right now, but these horrible OCD-like, repetitive, intrusive, unwelcome thoughts are getting hammered into my head over and over. It's like this: BANG! pause. BANG! pause. BANG! pause. The thoughts come, then stop, then come again. It's a word, or a phrase, usually, but it is repeated in my head and I cannot control it.


I've had this obsession with numbers since I was a little kid. I would be sitting somewhere, or going to sleep, and I'd count. Count forwards, count backwards, count again. I'd count to 10, or count to 100, or try to count to 1000. If I had something I had to do, and didn't feel motivated to do it, I'd make myself get up and move as soon as I was done counting. I'd use the numbers as a force to motivate myself. I was prone to depression since age 12, and first diagnosed at age 15 after a suicide attempt. As I'm sure you know, depression leads to a lack of desire to do things. So I'd procrastinate about something, and then count to make myself do what had to be done. The strange thing is, I still do that today. I've done it now for most of my life. It's a weird thing, but it's not a major problem of any kind, so I never actually talked about it with anyone. I don't think I've ever mentioned it here, even. But I count when I have to get up for work in the morning, before I get out of bed I'll go to twenty, then backwards to zero, then to twenty again, then backwards again, until, finally, I tell myself it's enough and I can get up and go.



Here is what it feels like in my mind:

It's time to get up.Italic Count to 50. Count backwards from 50 to 0. Do it a gain. Do it again. I need to get up and go to work. Count to 60. Do it again. Do it backwards. Count to 20. No, 30 feels like a better number. Zero to 30 two times. Then backwards. Okay, I can get up now.





Then, there have been the times when the obsessive thoughts were a real problem. When I had anorexia from my early teens, until around age 20, numbers meant a great deal because my entire universe revolved around calories, fat grams, and, later, carbs. When I was in my twenties, a few times I had bouts of the eating disorder again, and the number issue would become an obsession again. How many calories I could eat in one day, during these periods, was the issue that ruled my world.



I'm in my thirties now. I do not have anorexia anymore. I don't consider myself a "recovering" anorexic, because personally that doesn't feel accurate, but I understand why other people use that terminology. I just think that I overcame it, and it feels more empowering to me, and more accurate, to state that it isn't a problem I have anymore. I could be wrong, of course.




But because of my antipsychotic meds causing extreme weight gain and a slow metabolism, I now have a very real, problematic weight issue which affects my health. I am pre-diabetic. (As I've mentioned before, I gained 100 pounds in three years after going on antipsychotics, after previously having always been 100 pounds or less for 15 years.) Now, I legitimately need to lose a lot of weight. Strangely, my past talents at defeating the hunger urge no longer exist at all. I eat too much because I am hungry literally all the time, due to the Seroquel and probably also the Risperdal and also the Anafranil that I recently stopped taking with my doctor's approval.




The only reason I was ever on Anafranil was the obsessive thoughts. It's an old treatment for OCD symptoms. Anafranil is no longer used as commonly as other drugs like Luvox to treat OCD, but I had some kind of bad side effect from Luvox in the past that no longer comes to my memory, and so, I ended up on Anafranil for several years. Since going off of it, I do not notice the obsessive thoughts being necessarily worse, but they still exist every single day, which is why I knew that the Anafranil wasn't working.




Some of the obsessive thoughts are about horrible things, or gross things. When I was severely depressed and/or psychotic, they were often about death and suicide. But I haven't been severely depressed in the past two years, really. I don't get very psychotic these days (knock on wood), thanks to the meds that do work. Yet, I still have the thoughts. For example, I'll hear someone say something disgusting about something to do with bathroom issues, and then that thought will come back to haunt me over and over and over again, and I never really get rid of it. That's a mild version.




Worse, at times the thoughts are about criminal things or weird statements that I would never actually say myself; they come from some bizarre mental hell and they are always things that I would be horrified to even think of thinking, if I had a choice about it. My therapist told me that this is how obsessive thoughts and OCD work. You think of the very last thing that you would ever normally think of, and that thought comes back over and over, because the fact that it horrifies you and shocks you makes it recur more and more. So, she'd try to get me to tell her what the thoughts were. In some cases, I never told her, because I was humiliated by it. She told me once that if I never told someone about it, the thoughts would have more power and would just continue. I guess that is part of the reason I am writing this post. I would like to put the problem out into the open somewhat so I can try to diffuse the power it has in my brain. If it's true that the secrecy worsens the problem, then perhaps I can lessen the problem by talking about it here.


My therapist told me about other clients she had and the kinds of obsessive thoughts they'd have, so I would realize that I am not the only person with this problem. One of the stories she told me about was a devout Catholic, elderly woman who came to see her because whenever the woman went to church and was praying, suddenly the horrifying phrase, "F#$k you, God!" came to her mind. My therapist explained this as an example of how the obsessive thought is based on the last thing a person would normally be thinking about.




I miss my therapist. She's very knowledgeable and was a huge help to me the past three years. I can see myself having more problems lately because I do not have her to talk to anymore. Nothing I can do about that though. It is thanks to the government that she can't have me as a client anymore, and in truth she allowed me to keep coming for many months after they stopped paying the community mental health center for my visits. She literally gave me therapy for free, which was incredibly kind. As I write this post, I wish I could discuss the obsessive thoughts with her, because she would probably have some helpful input about the situation.

The obsessive thoughts are certainly not the worst problem I've had. They're not life-threatening and they don't ruin my life or anything. However, they are an incredible nuisance. Sometimes they are completely innocuous; for example, as certain word like "sing" will have a special feel to it, and I will have to say, "sing", in my mind to myself, over and over because I'll have this obsessive urge to do so. That's not a harmful thing. I'm sure it's not a normal thing either. But I don't consider it worth worrying about. Similarly, I have this habit of moving my feet compulsively whenever I'm sitting somewhere, and the only reason I'm even aware I do it is that my sister finds it incredibly irritating to see, so she snaps at me to stop it frequently. But, like "sing", this is not a real problem.




On the other hand, the gross thoughts or inappropriate words that come to mind bother me a great deal, and I would really love to have a way to get rid of them for good. I know that if I mention them to my doctor (who is actually an A.R.N.P., not a doctor), she'll be ready to put me on yet another pill, to treat this problem. I really don't want to go on another medication right now, if I can avoid it. I am on so much already, and I have to think about the long-term consequences of that and weigh those against the possible benefits another medication would have. Such is life with psychiatric illnesses.





Interestingly, I hardly think about the obsessive thoughts much of the time. This is because I am so used to them, I just normally treat them like a part of my life, and not indicative of something worth worrying about. Then, at times I wonder, "do other people's brains work this way?", and I suppose not. I'm sure some of you reading this might relate, but probably not most of the general population. In the past couple of years there have been a number of television programs on OCD (obsessive compulsive disorder), and in watching some of those programs, I became aware that some of my obsessive thoughts and compulsions to count and move my feet in a certain pattern are really indicative of a misfiring in my brain, not just some personal oddity.





I'm interested in your feedback regarding obsessive thoughts, and what your own experiences with them have been like, so please feel free to comment.

Saturday, May 22, 2010

May is Mental Health Awareness Month: Important Info & an Award


Hey, folks~
I posted this on my Facebook profile a few days ago. I compiled it from various reliable sources, most of which I listed in the message. Today, I celebrated Mental Health Awareness Month with my local NAMI (National Alliance on Mental Illness) chapter. We had our annual picnic. I actually got a really neat award given to me at the picnic. It's called an Iris Award, named after Vincent Van Gogh and the irises he liked to paint while he was looking through his windows at the psychiatric hospital he was in. I am a huge fan of Van Gogh, so I love the idea of these awards. They are given to people who do work in the area of mental health, or who volunteer or somehow contribute towards mental health awareness or the lives of consumers (people living with mental illnesses).

Several police officers got the Iris award this year for saving people's lives after they took the Crisis Intervention Team (C.I.T.) training. 10,000 officers have been trained through C.I.T. in the state of Florida, and 900 of them have been trained in my county. I received the award for my work as as C.I.T. speaker, and in the Consumer Council. I was really honored to receive it and I got to catch up with an old friend there as well. My mom came too.

Now, here is the information I put together for Facebook, which I think is worthy of posting here:

Facts You Should Know About Mental Illness

As May is Mental Health Awareness Month, I would like to offer you a moment to cultivate some awareness on this topic.

-The institution in the United States housing the largest number of people with mental illnesses is not a hospital, but is in fact the Los Angeles County Jail. (source: Pete Earley’s excellent book Crazy: A Father’s Search Through America’s Mental Health Madness)

-Approximately 2.2 million people have Schizophrenia in the U.S. That is 8 people out of every 1,000. The illness is twice as common as AIDS. When applied to the 2004 U.S. Census residential population estimate for ages 18 and older, this figure translates to 57.7 million people (source: National Alliance on Mental Illness, http://www.nami.org/)

At least 40 percent of them are not receiving treatment at any given time. Thus, there are approximately 900,000 individuals with schizophrenia who are not being treated.

There are at least as many individuals with schizophrenia who are homeless, living on the streets, and in shelters, as there are in hospitals and related facilities.

There are more individuals with schizophrenia in jails and state prisons than there are in all hospitals and related facilities.

Individuals with schizophrenia are increasingly the victims of crimes, including robberies, assaults, rapes, and murders.

People with mental illnesses (ie, mental health consumers) are far more likely to be victims of crimes than to be criminals themselves, despite whatever you have seen on Law & Order that makes it look as if everyone with Schizophrenia is a serial killer.

Public psychiatric treatment services, housing , and rehabilitation services for individuals with schizophrenia are often grossly inadequate and, in many states, getting worse.

The total direct and indirect costs of shizophrenia in the United States in 2000 were approximately $40 billion. That was more than the entire budgets of the National Institutes of Health and the VA combined.
Approxmately $10 billion of that $40 billion was spent on federal disability payments (SSI and SSDI) for individuals with schizophrenia. Schizophrenia was the single largest diagnosis for individuals receiving both SSI and SSDI.

(source for above: Surviving Schizophrenia by E . Fuller Torrey)

An estimated 26.2% of Amercans, ages 18 an older, about one in four adults, suffers from a diagnosable mental disorder in any given year.

Bipolar Disorder and Schizophrenia generally show up when one is in her/his late teens or twenties (for women it’s later than for men).

The average age for onset of mood disorders, such as depression and Bipolar disorder is 30.
You know someone who has a mental illness. Your neighbor, partner, friend, colleague, fellow student, college professor, sister, grandfather, child, niece, tennis partner, hair stylist, or governor may have a mental illness of which you are not aware, because people with mental illnesses, contrary to what you see in movies and television, actually do look like people.

On Creating Change:

If you, yourself, has a mental illness, know that you are not alone.

If you do not have a mental illness, don’t worry, they’re not contagious, and most of us don’t bite.

Phrases like “you’re crazy”, “that’s nuts”, “what a lunatic”, etc. are offensive and serve to further the stigma that enshrouds mental illness and prevents people from getting the health they need. We may all say these things without realizing the harm they cause, but it would be best to not do so.

You can’t get a mental illness by talking about mental illness or reading this message. Have no fear.
You can’t get a mental illness by talking about it, or by talking to someone who lives with a mental illness, or……by being a friend, lover, caring family member, neighbor, Facebook friend, coworker, etc…of a person living with a psychiatric disability.

You can’t get a mental illness by being lazy, stupid, or by being a jerk. Such character issues have no correlation to mental illness.

You can harm a person with a mental illness by being afraid of her/him, embarrassed by her/him, ashamed of her/him, and by being completely ignorant about her/his illness.

Being weird, silly, dumb, poor, a criminal, or many other derogatory terms, do not cause mental illness. However, it is true that most people with serious mental illnesses end up living in poverty.

Appropriate medication and therapy can successfully treat psychiatric disabilities and give a person her life back.

Medication and therapy are extremely expensive and therefore unaffordable for many people with mental illnesses.

Medication often comes with negative side effects, such as extreme obesity an Diabetes (particularly antipsychotic medications).

There is no cure for any mental illness known at this time.

We need a cure.

To get a cure we need more research.

To get that research we need funding.

Besides needing funding for research, we also need funding for community mental health centers, social services of all kinds, drop-in/recovery centers, and clubhouses such as The Vincent House in Pinellas Park which helps people with mental illnesses (ie, consumers) function in the world and find worthwhile work.
We also need more funding for Crisis Intervention Team training for law enforcement officers.

We need more public awareness campaigns to educate the public, and also better training on psychiatric disorders for medical professionals. For example, the excellent recent campaign at http://www.bringchange2mind.org/

We need more counseling centers on college campuses a college age is the age of onset for Bipolar Disorder and Schizophrenia and Schizoaffective Disorder.

We need more people to come out and speak about their own mental illnesses, in an effort to educate those around them and make people without mental illnesses realize that Frankeinstein, serial killers, and crazed maniacs on horror movies do not exactly represent us accurately.

We need to come out, as it were, of the "craziness closet".

If You Have a Mental Illness:

You are not alone. You have nothing to be ashamed of. You deserve equality and respect.
Organizations like the National Alliance on Mental Illness (NAMI) and Mental Health America can be very helpful

If you are feeling suicidal or in a crisis, please call 1-800-273-TALK. http://www.suicidepreventionlifeline.org/

Sunday, May 16, 2010

Dissociative Disorder is Not Schizophrenia: Truths and Myths about Mental Health

This is a topic I've wanted to discuss further here for quite some time. Many people in the general public confuse Schizophrenia with Dissociative Identity Disorder (D.I.D.), formerly known as Multiple Personality Disorder. Some people also believe having Schizophrenia means that you have "split personalities". Those of us who have personal experience and know more about the illness understand that this is far from the truth. There are, however, some similarities between D.I.D. and Schizophrenia, which lead, too often, to doctors misdiagnosing people with one of these illnesses when the people have the other illness. That happened to me, as well. I have written about it before here, but it's been quite some time.

One of my first obsessive thoughts was that I had been abused and blocked the abuse out of my mind. It's not the point of this post to painstakingly detail that story and try to explain it, but I just want to mention that, long before I knew I had psychotic symptoms, I believed I had been abused. And then, when I developed psychosis, I believed that the problems I was having were based on a trauma history. It was not difficult to find mental health professionals who encouraged that belief, and books that reinforced it. In 1999, I was living in Baltimore, and I saw a therapist at a hospital that has a trauma treatment program there. She said that I had a dissociative disorder (not D.I.D. but Dissociative Disorder Not Otherwise Specified). We discussed the different "parts" of myself.

Later, when I lived in Virginia, and was having more and more mental health issues, cutting myself again, starving myself, not being able to sleep, having horrible anxiety, and panic attacks, feeling suicidal, etc.....I saw, briefly, a couple of other therapists and went into three different hospitals several times within the span of two years. I also had frequent contact with the local program for survivors of rape and sexual abuse, as I believed that such things were the root of my problem. Almost all the time, when a woman believes she was sexually abused as a child, she probably was. But when a woman with psychosis believes this, it is not unusal for her to be incorrect. I have met other women in hospitals who believed the staff members were coming into their rooms to rape them every night. I had the same belief. Obviously, this was not occuring (which is not to say that it has never occured to anyone, just that in these cases it definitely was not). As a feminist, it's hard to talk about this topic, because I don't want to be accused of making people think sexual abuse is not common or not real. But as myself, I have to be true to my own experiences, so I am trying to explain to you how I came to think these things, when these things, most likely, were not true.

One of the authors on dissociative identities whose writing I read online back then was a Dr. Colin Ross. I recently saw him on television in a special about Dissociative Identity Disorder. This man has been made quite famous, and likely quite wealthy, through his writings on trauma and dissociation and his specialized treatment centers where these issues are specifically addressed. I almost went into his treatment center in another state at one point, after reading some of his writings. When I was delusional, many things I read or saw came to be part of my delusions, specifically when I would obsess about them. As I obsessed more and more about trauma and dissociation, I even grew to believe I was a Manchurian Candidate programmed by the federal government to assassinate people and work as spy. Psychosis does things like this to your mind, and it has nothing to do with how intelligent or rational you are. Things that are absolutely ridiculous and bizarre come to seem quite true, and in my experience, these delusions were cemented into my mind with things that I read which encouraged my delusional beliefs, and people who I spoke to who had the same types of delusional beliefs themselves.

I met some of these people at a trauma treatment center I was in twice at the Psychiatric Institute of Washington. The Center, as it was called, was founded in part by Christine Courtois, author of books on incest. When I was there, literally almost everyone on the unit (which was very small and had not more than 13 patients), was diagnosed with some type of dissociative disorder. The three who I got to know well there were all diagnosed with Dissociative Identity Disorder. Two of these friends I made thought they were ritualistically abused by satanic cults, the Masons and other groups. (Note: You are probably aware that really going through that kind of thing and then forgetting it all your life until you, as an adult, are diagnosed with a dissociative disorder, is not all that common, but I'm not going to debate how common it is or is not here at the moment.) I came to think the same thing about myself, only it got worse and worse in my case until I was absolutely sure that I was a victim of all kinds of mind control programming. That was the explanation that seemed to fit the weird occurences happening in my life and my mind at the time. Things were so bizarre, I needed some kind of explanation for them. The only explanation that made sense which I could find was this - I was programmed. My brain was held hostage, I thought. I was right about that, just wrong about what was holding it hostage.

Now, after years of medication that has helped restore my sanity, and a few years of therapy with a good, solid, logical, knowledgeable therapist who does not go around quickly dispensing the diagnosis of Dissociative Identity Disorder and who, in fact, assured me many times that there is no way I have that disorder, now, I know for sure what my real issues are. I no longer believe the delusions and no longer believe that much of what I read back then about trauma was accurate in the first place. Much disinformation can be found on the internet, and if you look at a lot of conspiracy theory sites, you can find pretty much most of the delusional realm I lived in written about by somebody else. This includes my delusion that there were hidden concentration camps in the United States waiting to take in people for slaughter during the end of the world. I have seen that in writing. I also believed it for years. Some of my most bizarre beliefs, like the thought that I was pregnant for four years and that people ate human beings and called it "bread" - well, you won't find anybody writing about those. But about the other, earlier delusions, it is disturbing that there are websites that helped to solidify those thoughts in my mind.

There is, as I was explaining at the beginning of this post, a lot of confusion in the world about Schizophrenia, Schizoaffective Disorder, and other disorders of psychosis. Most people do not understand these illnesses and what they really involve. Most people still think that what they saw on One Flew Over the Cuckoo's Nest in the 1970's or last week on a cable channel demostrates reality. It really doesn't, in many respects. There has been a lot of parent-blaming, and particularly mother-blaming in the psychiatric world in the past, and even today by people who do not necessarily know much about mental illness. Women-blaming has been a pretty popular pass time in most regions of the earth since the day Eve supposedly gave away that apple. Unfortunately, it has even been done by the scientific community in regards to mental illness. The "schizophrenogenic mother" is a term you won't hear of too often today, but try doing a Google search and you'll see what I mean. Next, see if you can find a page on a "schizophrenogenic father", ie. a father who caused schizophrenia. You'll find there is no information about such fathers out there. But there is plenty of outdated information blaming women for causing their children's Schizophrenia. Check out this video for a brief overview: http://www.whenmedicine.org/MedW/Home.html.

I read about this in a recent feminist book called Bluebird, by Ariel Gore. This book does an excellent job of explaining some of the psychiatric profession's maltreatment of women and blaming of women for everything under the sun. Let's be clear: there is no evidence that childhood abuse actually causes Schizophrenia or Schizoaffective Disorder. There is no evidence that the kind of mom you have has anything at all to do with whether or not you develop such a mental illness. There is a big difference between actual psychosis, which is a biologically based brain disease, and trauma-based problems such as Post Traumatic Stress Disorder or dissociative disorders. They are not the same thing. My mother didn't cause my illness. Whether or not she did anything wrong or whether she had any problems of her own has nothing to do with this illness or why I got it. Similarly, I can't blame it on anybody else, including my father, and I wouldn't want to blame it on anybody anyway. I would like to see the day when society holds a clear understanding of what psychosis is, and when medical professionals, including therapists, know very well what the symptoms of psychosis are and how they differ from dissociation. I could have been correctly diagnosed ten years ago, and given the proper treatment. But I wasn't. I was given a bunch of misnomers for labels and no actual helpful information at all.

To be fair, it is hard for anybody to know when a person is psychotic, particularly the person herself. You don't want your first instinct to be that the person you are treating in a therapy session is imagining everything she's talking about. Indeed, such an assumption would do terrible harm to many people seeking help. But there is a need for clear distinction between what is real, and what is not real. When a person is psychotic, the worst thing you can do to that person is to affirm her completely delusional world as reality and pressure her to fall further down the rabbit hole. Likewise, it is not really helpful to tell a psychotic person you think she's psychotic, at some times. There are, however, times when it is appropriate to tell someone this fact. I found that I had to almost die of a horrible suicide attempt before a doctor would say to my face that I was psychotic and give me a correct diagnosis. I had to go in and out of hospitals for years, in different states, with different diagnoses, and never really getting any help that lasted at all, before I found out the actual problem. This is not an uncommon story. Indeed, far more research is needed in the field of mental health, and of course this requires more funding.

And more funding is sorely needed for adequate mental health treatment. Our community mental health centers are underfunded and the evidence of that fact is everywhere around us. People are living on the streets because they are not receiving appropriate treatment for their illnesses, and this occurs right outside my apartment door. There are people in jails who have never been put on the appropriate medication and kept on it long enough for it to work, and such treatment almost never occurs inside jail cells. In his landmark book, Crazy: A Father's Search Through America's Mental Health Madness, Pete Earley describes the fact that the Los Angeles County jail houses more people living with mental illnesses than any mental health treatment center or hospital in the entire United States.

Until our society considers mental health an actual priority and funds the research and treatment needed by millions of people in an adequate manner, we are going to continue to have misinformation, and a lack of appropriate education on mental health issues. We will continue to have the ignorance that allowed people to say mothers caused their children's Schizophrenia for years, or that women who were outspoken must have been insane. Or that people who live with mental illnesses/ psychiatric disabilities are dangerous criminals for the most part and are more likely to be a serial killer on Law and Order than your next door neighbor who seems so perfectly "normal".

So, in honor of mental health awareness month (May), I would like to call for this: adequate diagnoses, adequate, helpful (and not harmful) treatment, drugs with fewer side effects so you can both not be psychotic and not be obese at the same time, no more blaming of mothers for the mental illnesses of their offspring, no more mislabeling, no more pop psychology books based on nonsense and bad science or no science, no more ignorance about mental health. No more injustice for people living with mental illnesses. We need to, simply, change the world. It starts one person at a time. Are you with me?

Monday, May 10, 2010

parallel forms of oppression, parallel tools of activism (and internalized shame)

A week ago I participated in a statewide conference for Florida NOW, and had a great time. I was on the committee that helped to plan the conference and it was great to see things come off successfully. I had the opportunity to meet several amazing women whom I admire, and see a number of women I have met through NOW and feel privileged to work with on women’s rights issues.

That weekend I was also supposed to be at a meeting of the NAMI consumer council in which I am acting secretary, however, I had to skip the meeting so I could be at the conference. As a member of the board of directors of Florida NOW it was important for me to be there.

I am committed to working within both of these organizations. It has come to my attention lately that I am living a dichotomy in my life in some ways. I am not really “out” and open about my psychiatric illness with my colleagues in NOW. Similarly, I rarely discuss women’s rights with my friends from NAMI. It is odd, this dichotomy, and what it boils down to, in some respects, is shame. I am ashamed, on a deep level, of which I am not always consciously aware, that I have a serious mental illness. And I don’t want that serious mental illness to be the defining factor of my life when I meet people and introduce myself. I want people I meet in activist efforts to know me as an activist. It’s not really relevant to tell them about my health – psychiatric or otherwise. However, I can see clearly that this shame is causing me to be ashamed and sort of “in the closet” about my mental illness. While I know much stigma and discrimination exist in this world, even amongst the most liberal and socially conscious people, I am also keenly aware that the stigma which enshrouds mental illness is not going to die until more people who have these illnesses start coming out of the closet about it.
If I were more open about my illness with people I meet, I could, potentially change their concept of what a mentally ill person is like, and give them a more accurate understanding of both me myself and Schizoaffective Disorder. Yet, while I may, at times, sound like the most outspoken of advocates for consumers of mental health care, I am afraid of what will happen when people I respect find out that I hear voices in my head, I have attempted suicide many times, I take a boatload of medication every day, morning and night, and I have been hospitalized more times than I can remember in psychiatric wards. I don’t want them to lose respect for me, pity me, think less of me, question my abilities and cognitive capabilities, be afraid of me, find me disturbing, or any other of the possible negative outcomes of coming out as schizophrenic or schizoaffective.

Thinking about this problem of shame, I began to consider the reasons why I do not need to feel this shame. I began to ponder the similarities of my two advocacy volunteer jobs. I can see many parallels in the oppression of women, worldwide, throughout most of the history of time, and the oppression of persons with psychiatric illnesses. I was born female, and, therefore, have experienced sexist discrimination since birth. I was not born with a mental illness, but I have experienced discrimination as a result of my illness since the illness began to manifest itself. Women are taught to “keep silent about their close escapes” as Alice Walker once wrote in a poem I love called, “On Stripping Bark from Myself” (see the sidebar left column on this blog to read it). People with psychiatric disabilities quickly learn to be ashamed of themselves because the demonizing of mental illness is prevalent everywhere in our society.

As a woman, I have had to experience losses that were not fair or just. I lost my self-esteem as a girl growing up in a patriarchal society where I realized by the age of eight that I would be expected to be married and have children as an adult, and I decidedly didn’t want to do that with my life. I wrote documents swearing my aversion to marriage and guaranteeing that I would never be held by a ball-and-chain to any man. I had family members “notarize” the documents, and my grandfather kept them hidden in a drawer in a secretary in his living room. I knew I didn’t want the life I saw some women living, and I knew that there were a great deal of things I wanted to do which did not include being a secondary citizen or a slave to a husband (as I thought of marriage at the time, based on what I saw around me).

As a woman, I knew at a young age my father wished I had been born a boy, and I felt that he didn’t really want a daughter much. As a woman, I had teachers who treated me as if I were invisible because I was shy and insecure, and their treating me this way always served to make me feel more shy and insecure than I did before. As a woman, I have experienced sexual violence. As a woman, I have been labeled a victim though I prefer to be known as a human being. As a woman, I wished at times that I were not a woman, as life would seemingly be easier as a man, and success would be more accessible.

Similarly, as a person living with a mental illness/ psychiatric disability, I have had my brain trapped, my thoughts hijacked, my life as a healthy human being taken away from me, and an identity as a secondary citizen, or, even a subhuman thing, assigned to my name. I have seen many doctors for physical illnesses who wanted to dismiss me as a person with a mental illness, as if that was the explanation for every health problem I ever had, and ninety percent of the time, they were incorrect with the mental illnesses they diagnosed. I was invisible then, with both a physical invisible illness and a psychiatric one that led medical professionals to forget that, first and foremost, I was a human being just like them.

As a person with a psychiatric disability, I have felt rejected by friends, and in a couple of cases, looked down upon by family members. I have met many therapists and psychiatrists who did not consider me to be an equal human being and talked to me in a most condescending manner, as if the fact that I had a mental illness meant that my entire brain was defective, rather than just a portion of it. I have also met excellent therapists and psychiatrists who did not treat me this way, but they were harder to find. So, once again, I had my identity negated. I was not an intelligent woman or a college student. I was a mentally ill person, and that nullified my other roles in this world.

Because of my mental illness, a horrible coworker harassed me and essentially forced me out of a job two years ago, because my secret came out. Consequentially, now I do not disclose my illness to anybody I work with. When people find out that I have a disorder that starts with the term "schizo”, they generally take a step back, and look at me in a different way, not always a hateful way, but a confused, or scared, or shocked way. I have had friends disappear from my life because of this illness, and was left to flounder in it alone, hating myself even more since people did not want to talk to me when they experienced my symptoms back before I received proper treatment for them. My ability to be a friend, an employee, a neighbor, a daughter, all of these were changed forever when the “schizo” term was as assigned to my name.

Now that I have illustrated here some of the similarities between sexism and the stigma against mental illness, I would ask you to please imagine for a moment what life is like when these two forms of discrimination are combined. Several years ago, I took a course at a college I was attending called “American Pluralism”. One of the topics we discussed and read about in that course was “double oppression” and “triple oppression”, which are the scholarly terms used to describe two or more forms of discrimination occurring together against a person. Being a woman with a mental illness is double oppression. If you add to that being poor and living in severe economic hardship, that’s triple oppression. If you want to go further, you can add having a chronic, disabling physical illness. I guess now we’re talking quadruple oppression, but the point is, it’s harder to live on this planet under certain conditions. I am lucky in many respects. In a racist culture, I was born white and therefore have experienced privileges I never wanted, deserved, or asked for, based on my skin color. In a world saturated with homophobia, I was born heterosexual, and therefore have not been on the receiving end of gay bashing (although many people I’m related to probably assume I am gay, being a single woman, a feminist, and a friend or ally of many gay people).

So, the point is, I’m not trying to claim the right to call myself a victim of every form of oppression that exists. Rather, I am trying to explain, both to you readers, and myself, what the connections are between the two passions I have as an activist – feminism and mental health awareness. There are many reasons why I care about both types of advocacy. I feel they are important parts of my life, and that they define me more than being a woman defines me, and more than being a person living with a mental illness defines me. As Alice Walker once wrote, “I am an activist. It pays the rent for living on this planet.” And so, I choose to think of myself as an activist, and I choose to be an activist. I am not a victim. I am a member of more than one oppressed groups of people, but I make combating that oppression a major aspect of my life and I deeply enjoy activism efforts.

I think that it would be excellent if the correlation between being a woman, and being a person living with a mental illness were more frequently discussed. I have not seen many discussions of this which delved into the similarities of these two groups. I come into some difficult decisions these days, when I have to decide whether I will work on NAMI issues or whether I will work on NOW issues on any given day. I want to do both, but time, or the lack thereof, and fatigue are limiting my ability to do that. I hope to make my life’s work – either paid or unpaid – about mental health advocacy and feminism, because these are the issues the universe put in my lap, and as they used to say in the disability rights movement, “Nothing about us without us.”

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