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Hearing Voices at Boeing October 25, 2014

Posted by Crazy Mermaid in Hearing Voices.
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NAMI has several signature programs (all free), including one called In Our Own Voice.  In this very structured program, two co-presenters talk about what it’s like to live with a mental illness on a daily basis.  The program is about an hour long, with time for questions and answers at the end.

For me, stress brings on hearing voices.  In my daily life, I live a fairly stress-free life.  I have my routines, and my husband and family do a good job of insulating me from stress.  We live frugally, but have no major money problems that I am aware of.  I am no longer aware of any of our financial information because when I became psychotic I blew through lots of money in a short expanse of time, so while I was still in the mental hospital we decided to safeguard our financial future by keeping me ignorant of our finances.  The long and short of it is that a lack of information and a trust of my husband’s financial acuity mean that I can relax about money and not worry about it and stress about it.

The one thing that brings stress into my life is the In Our Own Voice presentations.  I stand before a group of strangers and share the story of my psychotic break and my resulting life changes.  Simply sharing that story brings back a state close to my psychosis as the memories of what was come flooding back.  With the return of that state comes a voice.  I tell the audience about the voice.  It is actually talking to me via ESP in my head during my presentation.  The voice is neither a man’s nor a woman’s.  It is genderless. As the presentation starts, it starts talking to me in a fairly quiet voice.  But as the presentation continues, the voice gets louder.  Fortunately, it doesn’t get as loud as it used to when I was psychotic, when I couldn’t hear myself think because the voice was so loud.

The voice tells me things to say to the audience, reminding me not to forget certain parts of the presentation.  It also tells me things to remind my partner to say.  It makes observations about audience members, especially focused on pepole’s clothing and hair.  I don’t notice these things until the voice points them out to me. It is distracting, but I have learned to live with it.  I am willing to put myself through this in order to bring knowledge and understanding of mental illness to a broad audience.

I have been told that because I know the voice isn’t real, I should be able to internalize that thought rationally and eliminate the voice entirely.  But it simply doesn’t work that way.  Even though I know the voice isn’t a real person, it still behaves as a real person, with thoughts of its own.  It isn’t simply my subconscious talking.  It’s a separate being apart from myself living inside my head and sharing my body.

Recently, my presentation partner, Matt, a chiropractor with a similar psychotic history, and I gave a presentation to a group of Boeing employees.  We typically get a few questions from the audience from every presentation, and audiences are usually eager to ask both of us questions, and usually bring up a question or two about the voice.  Surprisingly, at the end of our presentation, no one in the audience asked a single question. Not one.

I suspect that the stigma of mental illness played a large part in the lack of questions.  If you ask a question, it might mark you as someone with familiarity with mental illness, which might impact your career.  I understand that reasoning, but the whole point of the presentation is to break down that stigma and make it okay for people to ask questions.  Although we failed in that aspect of our mission, I think it is important to expose people to the reality of mental illness.  Telling people that I am hearing a voice during my presentation shows them that you can hear voices and live a fairly normal life, which is the other key part of the presentation.  You look perfectly normal, and no one knows what’s happening inside your head unless you tell them.

One day, I hope that people will be free to ask us questions during a presentation like that. But we’re not there yet.

Hearing Voices: A Comparison July 16, 2014

Posted by Crazy Mermaid in Delusions, Hearing Voices.
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If you think all people hear the same thing when they hear voices, think again.

human-ear-clip-art_421267

When I hear voices, they come from inside my head. If you can imagine what it would be like to have esp, you get an idea of what I hear. It’s like someone is sitting or standing next to me, talking to me mind to mind. The voice is gender-neutral , and loud enough to hear over the sound of other people talking. Sometimes it gets louder, as if it is shouting, but it never whispers. The voice makes observations of its surroundings, asks me to ask various people questions, comments on things people say, and is especially interested in what people are wearing.

Some people point out that they hear a voice too. They say the voice I hear is actually my subconscious. But they can’t understand what I mean when I say I have esp with the voice. And my esp didn’t start until I had my psychotic break. In fact it is a residual effect of that break.

I had a fascinating conversation with a young woman who was diagnosed with schizoaffective disorder fairly recently. We compared what it is like for each of us to hear voices.

In her case, she hears voices from the outside in. And they’re voices of people she knows. So imagine you’re looking out at a car in a parking lot. You can’t see through the windows of the car. Suddenly, you hear the voice of your friend coming from behind the car. You would swear that your friend is calling to you from behind the car. But when you approach the car, there is no one behind it. That’s what she means when she says she hears voices.

When I heard her story, it made me thankful that if I have to hear voices, I hear them the way I do. When I hear my voices, I have no illusions that they are real. She, on the other hand, never knows until she can physically see the location the voice is coming from.

She has difficulty telling what is real and what isn’t. When she hears someone talking to her, she doesn’t always make the distinction between what they are saying when they’re standing in front of her and what they say when she can’t see them. The memory of what they say stays with her, real or imagined. And the things they say are not always positive. So she gets the impression that people are saying things that aren’t nice , and that maybe they don’t really like her, because of what she hears them say when she can’t see them. She only hears people she knows. I on the other hand have never met the people whose voices I hear.
I am thankful that my voices are so benign. The things they say are actually rather boring to me. I don’t question whether they like me. It doesn’t matter to me. And in fact they don’t treat me poorly. And they don’t show up until I am under stress. In that we are alike. Hers show up under stress also.

Stress seems to be the common denominator between us, bringing on the phenomenon of hearing voices.

Unlike her, I build my life around avoiding stress, with one exception. I force myself to do NAMI’s In Our Own Voice presentations, because I believe my momentary discomfort (if you can even call it that) is worth the price of educating people and removing stigma associated with mental illness.

In her case, she doesn’t  go out of her way to avoid stress like I do. She used to teach school, but now subs for other teachers, a job that causes stress. Walking into a class full of middle school children with only a lesson plan written by their normal teacher, complete with notes about which kids are difficult, isn’t for the faint of heart. And yet she continues to expose herself to stress because she loves what she does. It’s worth the price of hearing voices to her to continue.

We are each coping with our mental illness in our own way.  I wish her every success.

The Case for Insanity November 21, 2013

Posted by Crazy Mermaid in Delusions, Hallucinations, Hearing Voices, mental illness.
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The case for insanity is compelling

In early February 2008, at the beginning of my traipse into a world of make-believe, I had ESP.  How cool is that? I talked with people in my head.  Powerful people.   Bill and Melinda Gates. The Dalai Lama. Oprah Winfrey.  My (then) bosses. All of these people and more were at my beck and call.

Then there was my job situation.  In my fantasy world, my (real) boss, via ESP, directed me to quit my (real) job.  So I did. Then, via ESP, he begged for my return, promising me more money and better control over my job.  In the meantime, Bill and Melinda Gates offered me a job at The Bill and Melinda Gates Foundation.  For twice the money.

And yet money had no real value.  I had access to Bill and Melinda Gates’ money.  I had a friend who was a time traveler who could make it so that I had money whenever I wanted it.  Because money meant nothing, I wrote a (NSF) check for  a beautiful, gold, brand new Lexus Convertible car.  Bill and Melinda Gates were going to reimburse me for the purchase as part of my new employment package. I bought a new wardrobe for my new job.

I owned $2 million in jewelry, including a 3 carat yellow diamond in a platinum setting, and an abalone bracelet that had once been owned by my (Mermaid) grandmother.

I talked with trees, dogs, and cats.

Last but not least, I was a genuine Mermaid.  Fish talked to me (literally). I had fins for feet. I had a beautiful tail.

I was beautiful.  I was energetic.  I was wealthy.

Now tell me that mental illness is terrible.

Hearing Voices June 26, 2013

Posted by Crazy Mermaid in Delusions, Hearing Voices.
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human-ear-clip-art_421267Hearing voices means different things to different people.  In my case, it means that a voice inside my head talks to me.  It isn’t a woman’s voice or a man’s voice.  It has no pitch, but the words are distinct.  Although the words are coming from inside my head, the perspective is that of someone standing or sitting next to me or walking alongside me.   If I’m alone, the voice makes observations about my surrounding area or my life in general or makes statements about things.  If I’m with another person, the voice tries to tell me what to say out loud.  It asks me to ask that person questions or asks me to make observation statements to them. That failing, the voice makes observations about my environment.

People are surprised that I still hear the voices, despite the fact that I know they aren’t real.  They think I should be able to make them go away simply by telling them they aren’t real.  It seems logical that it would work that way, but in fact it doesn’t. In the beginning, I spent a lot of time arguing with the voices, telling them I knew they didn’t exist.  But it didn’t do any good. They talked anyway.  In fact, I got in arguing matches with them, which probably isn’t a good idea.  They outlast me. They always win the argument, and I think their interaction with me to the degree an argument requires simply adds more stress to the situation.

I know that some people think the questions or thoughts from the voices are actually my subconscious, but I disagree.  The voice’s questions and statements are not part of my regular thought pattern.  It is as if there is another person inside my mind, doing and saying things on their own.  There’s someone foreign in my mind with me, and they won’t go away. I can’t integrate their thoughts into my own, because their thoughts are separate from mine. If the voices were truly just a part of my subconscious, they would be able to read my mind. But they can’t.  They have no idea what I’m thinking.  They’re a separate entity entirely.

I am fortunate that the voices don’t tell me to harm people or myself, and that the comments and questions are innocuous at best and annoying at worst.  The scary part is that when the voices return, it’s as if there is someone else in my head- an alien of sorts.  I can’t have my mind to myself, and the voices crowd out my own thoughts.  I miss being inside my head alone.

When I reduce my stress level, the voices fade into the background and eventually disappear.  But when my stress level increases, the voices return.  At first they’re just there occasionally, but the more severe the stress, the more of my mind they inhabit.  They take over more of my day, crowding out my own thoughts, until the stress dies down.  Then they’re gone again for awhile, until the next set of stressors arrives. It’s been this way since I got out of the mental hospital, which was five years ago on the 18th of this month (June 2013).

I know my family is afraid of the voices.  Actually they’re afraid that the voices will displace my mind entirely and that the voices won’t let me back into my mind.  But I have confidence that my psychiatrist will be able to make them go away if they get too powerful.  He did that for me when I was hospitalized, and I trust that he can do it again if he has to.  The only thing I have to do to keep them from taking over is to watch my stress, but that’s easier said than done in life.  Things happen that I can’t control.  And that’s a bad thing because it brings the voices back.  But so far, I have been able to return to my mind, alone, after the stress goes down.  So far so good.

Sam the Psycho January 3, 2013

Posted by Crazy Mermaid in Delusions, Hallucinations, Hearing Voices.
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Walking into the mental illness support group, I was surprised to see two teenage boys sitting side by side in our small circle of chairs. Very few young people came to our support group.

It was clear from Sam’s glassy and brilliant eyes that he was the one with the mental illness, and that his friend, Carl, had simply been the means of Sam’s transportation to the meeting. Later on, we learned that Sam’s mom had actually talked Carl into bringing Sam here. I surmise that Sam wouldn’t get in the car with his mom. Or vice-versa.

When Sam’s turn came to share, he said he was getting more violent against his mom, and that he was having trouble with his relationship with her. His principal complaint was that she didn’t agree with his religious views.

He claimed that he and God were buddies.  He also claimed to be possessed by the devil and demons. He said he was routinely roused from sleep by the demons’ violence against him.  They punched him and pushed him and yanked his hair while he tried to sleep. Oh yeah: and he said he wasn’t mentally ill. He was just possessed.

Initially, he and his friend sat quietly listening to the three of us share our stories. But as time progressed, Sam was increasingly claimed by his invisible friends.  Talking and laughing with them, he faded in and out of our reality.

Sam said he had been taking two anti-psychotics for 2 months. Based on his severe delusions and his statement that he wasn’t mentally ill, I seriously doubt that he was taking his meds at all. His friend said that Sam hadn’t been back to his psychiatrist since he had been given the anti-psychotics. I suspect that was by choice.

Leaving the meeting, I realized the danger Sam’s mother was in. I hoped she had a lock on her door. After all, her teenage son, known to be very angry with her, roamed around the house believing that he was alternately God’s best friend or possessed by the devil and demons. It isn’t a stretch to imagine him slipping into her room at night and slitting her throat or stabbing her as she lay sleeping, convinced that the devil and demons- and maybe God- had directed him to do it. She would be just another dead mother whose soon should have been committed to a mental hospital before he murdered her.

Anosognosia Rears Its Ugly Head (Again) October 17, 2012

Posted by Crazy Mermaid in Hearing Voices, Insanity, mental illness.
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Anosognosia is the term for the most dangerous symptom of mental illness. It’s the belief that you’re not mentally ill and don’t need your meds.  I have been suffering  from this symptom a lot lately.  I have almost convinced myself that my diagnosis is a big mistake and that I don’t need my meds.  If I go off them, my memory and reasoning ability will return, as will my ability to get up at a reasonable hour. I will be employable once again, and because I’m so good at my job, I will easily find a position as a project manager and be back to my beloved profession, building buildings.  All of this is not possible while I’m on my meds.

I know consciously that going off my meds would be a bad idea, but because of this symptom, the concept seems perfectly reasonable.

Unlike many others, I have the sense to discuss my plan with my loved ones.

My sister, when confronted via phone with my idea, told me to open my copy of An Unquiet Mind by Kay Redfield Jamison. It’s a book where Jamison details out what it’s like to have a mental illness. My sister pointed out that Jamison, like me, convinced herself  that she’s the exception to the rule of needing her meds. In her book, she goes off them and repeats her cycle of mental illness, finally coming to terms with it and returning to her meds.  Reading that passage gave me doubts about going off my meds. Maybe that wasn’t the answer, but maybe it was.

If I stop taking my meds, the voice will probably- but not necessarily-return. But I’ve been hearing that voice for years, so it’s not a big deal. In my mind, it doesn’t mean I’m psychotic. I can manage to keep living in the “real” world without my medication as long as I can put up with a voice. My backup plan would be a return to the mental hospital if my psychotic state returned.

Bouncing this idea off my husband brought up a little problem.  If I went off my meds, and a voice returned, wouldn’t this mean I was psychotic again? he asked.  I disagreed. One voice doesn’t make you psychotic. But  if the definition of psychotic excludes hearing one voice, then how do I know when I’ve crossed the threshold into my definition of psychotic again?  How many voices and delusions does it take to be psychotic?  And would I recognize it if it was happening? Therein lies the problem.

Between my sister and my husband, I gave in to their logic and stayed on my meds.  But the battle never ceases.

Sam the Psycho July 8, 2012

Posted by Crazy Mermaid in Delusions, Hallucinations, Hearing Voices, Insanity.
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Walking into the mental illness support group, I was surprised to see two teenage boys sitting side by side in our small circle of chairs. Very few young people come to support groups.

It was clear from Sam’s glassy and brilliant eyes that he was the one with the mental illness, and that his friend, Carl, had simply been the means of Sam’s transportation to the meeting. Later on, we learned that Sam’s mom had actually talked Carl into bringing Sam here. I surmise that Sam wouldn’t get in the car with his mom. Or vice-versa.

When Sam’s turn came to share, he said he was getting more violent against his mom, and that he was having trouble with his relationship with her. His principal complaint was that she didn’t agree with his religious views.

He claimed that he and God were buddies.  He also claimed to be possessed by the devil and demons. He said he was routinely roused from sleep by the demons’ violence against him.  They punched him and pushed him and yanked his hair while he tried to sleep. Oh yeah: and he said he wasn’t mentally ill. He was just possessed.

Initially, he and his friend sat quietly listening to the three of us share our stories. But as time progressed, Sam was increasingly claimed by his invisible friends.  Talking and laughing with them, he faded in and out of our reality.

Sam said he had been taking two anti-psychotics for 2 months. Based on his severe delusions and his statement that he wasn’t mentally ill, I seriously doubt that he was taking his meds at all. His friend said that Sam hadn’t been back to his psychiatrist since he had been given the anti-psychotics. I suspect that was by choice.

Leaving the meeting, I realized the danger Sam’s mother was in. I hoped she had a lock on her door. After all, her teenage son, known to be very angry with her, roamed around the house believing that he was alternately God’s best friend or possessed by the devil and demons. It isn’t a stretch to imagine him slipping into her room at night and slitting her throat or stabbing her as she lay sleeping, convinced that the devil and demons- and maybe God- had directed him to do it. She would be just another dead mother whose soon should have been committed to a mental hospital before he murdered her.

Hearing Voices and A New Identity September 16, 2010

Posted by Crazy Mermaid in Delusions, ESP, Hallucinations, Hearing Voices, mental illness.
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I admit the first time I heard the voice of my boss, Mark, while driving down the freeway alone in my car, I was surprised.  He wasn’t in the car or on the cell phone, and yet he spoke to me as clearly as if he were sitting next to me. I realized immediately that I had a special power: ESP. It didn’t seem unusual at all to be gifted with special powers, and it didn’t even cross my mind that I could be mentally ill. I was simply gifted.

I assumed from the very first time I heard Mark’s voice that I had control of my ESP. I assumed that I would be able to simply stop hearing the voices whenever I chose to, and that was how it worked. At first.

Then things changed, and suddenly I was no longer in charge.  The voices were. As the voices slowly increased in number- around 50 at the high- they also increased their grip on my mind, ultimately refusing to leave. When I eventually begged and pleaded with them to leave, they wouldn’t go away.  That’s where the strength of my personality played into the situation.

I should have been terrified when the voices wouldn’t leave. I should have sought immediate medical intervention when I felt my mind being smothered by theirs, wrapping their thoughts around mine and choking me off  like morning glories on a rhododendron.

But because of the nature of my personality, I felt strong enough to handle the situation. I had always succeeded in everything I had undertaken before, so this wouldn’t be any different. I fought hard to keep a sense of self, knowing that I would prevail, despite the increased smothering of my ideas by theirs. To keep things from unraveling, I learned not to express fear. To express fear brought on the evil voices. But to embrace the voices with love kept the voices slightly off-balance. Where there should have been fear in me there was a sort of pity for them.

My saving grace was that the voices never learned how to read my own independent thoughts. This situation is hard to articulate even now, but suffice it to say that they tried to smother and replace my thoughts with their own, but they never knew what my thoughts- my real thoughts- were.

Trying to maintain my separate being from being taken over by the voices was like being in a room with someone fighting for possession of increasingly more space. Never satisfied with taking just a part of the room, they moved their line of possession to increasingly larger sections of the room. As long as I could maintain even a tiny portion of the room, I could hold on to my identity.  That was what protected me from total destruction.

Eventually, the voices took over my entire mind, cleanly breaking my mind off and replacing it with their own, plunging me into a total and complete break from reality. Their reality became my own.

In the days and hours before my involuntary commitment to the mental hospital, my independent personality was a sliver of what it had been before the mental illness took over. As my husband drove me to the emergency room, the last shreds of what used to be me disappeared, replaced in totality by Pangea the Mermaid, the identity of the new inhabitant of my body. The old Kathy was lost forever.

Only strong medication administered in a mental hospital under constant supervision broke their thoughts from my mind. But as their claw-like grip on my mind receded, what remained in the room was not what used to be there. The thoughts that took over my mind also took over my identity, and the medication that wiped out Pangea never replaced it with the old Kathy. My former personality was destroyed first by the voices and then by the medication. The mind emerging from the tunnel isn’t the mind that entered it.

As you might imagine, this situation created an identity crisis of major proportions. I’m not the old Kathy, and neither am I Pangea.  I’m someone entirely new. And that’s where therapy comes in.  My therapist has slowly, over a two year period of time, helped me define and identify who this new person is.  I hate to think about how empty my life would be  without the help of my counselor. Her assistance in rebuilding me from scratch has made life worth living for me and my friends and family.  Without her help, I would be in a horrible place- neither one nor the other. Now I realize that I’m not Kathy 1, and not Pangea. I’m Kathy 2, and that’s just fine.

Which Medical Condition Is the Worst? July 15, 2010

Posted by Crazy Mermaid in Hearing Voices, Insanity, mental illness, Psychotic, Schizophrenia.
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If you had to guess which medical condition was the worst, which one would you pick?

Most people’s thoughts would go immediately to the most widely publicized, the disease advertised as the most painful and deadliest of all diseases: cancer.  With pancreatic cancer, the victim suffers prolonged agony, relieved only by colossal injections of pain medication, until finally he expires, leaving his cancer-ridden body once and for all.  The worst possible disease, some would say.

Many would choose Alzheimer’s disease as the worst disease.  Your mind slowly loses memory, forgetting things and people and places. Eventually, your heart “forgets” to beat, and you pass on, leaving a wake of pain and suffering by your loved ones.  Because you generally become less aware of your surroundings as time goes by, and because the deterioration happens over years or even decades, the pain and suffering are felt more by your family and friends than you.

Some would say that Lou Gherig’s Disease, also known as ALS, is the worst. Like Alzheimer’s, your body slowly forgets to function, but unlike Alzheimer’s, your mind works perfectly.  The result is a little like waking up in the middle of a surgery, and being unable to communicate to the staff that you are awake. Your body is paralyzed, but your brain is wide awake. Thankfully (or not), death is generally relatively quickly.

Others would say that a stroke is the worst, for reasons similar to ALS. Your mind is generally awake, but your body is unable to communicate that awareness to the world at large. Thinking that your brain has turned to mush because you undergo the humility of wearing diapers and eating baby food,  your family may treat you like you’re a piece of furniture, or as if you’re an infant. Unable to communicate your complete awareness to them, you suffer for years or even decades in silence.

As the worst possible disease, mental illness isn’t even on most people’s radar. But consider, for a moment, the facts.

One of the problems is that unlike cancer, mental illness has a lousy public relations campaign. It doesn’t have a public personality attached to it- at least nobody positive. There’s no Lou Gherig or Lance Armstrong or Stephen Hawking to bring a sense of empathy to the masses. Unlike breast cancer, hundreds of millions of dollars aren’t spent on events to publicize mental illness- events like the Susan G. Komen Walk for the Cure – where the color pink has come to symbolize breast cancer in everything from headbands to hand mixers. Unlike Lance Armstrong’s Livestrong cancer campaign, where yellow bracelets signify triumph over cancer, there is no public campaign for the little plastic bracelet color for mental illness awareness (silver). In fact, because of its enormous stigma, you would be hard-pressed to find many victims and family members willing to take the spotlight for mental illness.

Everyone recognizes that the term “cancer” is a blanket term for a multitude of illnesses all sharing the same basic characteristic: improper cell division. Unlike cancer, the general public doesn’t perceive mental illness as a blanket name for illnesses caused by improper brain chemistry. Both are breakdowns of normal bodily functions, yet cancer doesn’t have the reputation of being a character flaw or a sign of moral bankruptcy that mental illness does.

Patients with cancer are not embarrassed to tell their friends and family their diagnosis. They aren’t afraid of being thought less of as a person for that diagnosis, that somehow they fell short. But with mental illness, the stigma is so great that the fear of rejection and isolation is a legitimate concern.  You just don’t tell anyone.

Because their loved one’s illness isn’t associated with moral bankruptcy and character flaws, friends and relatives of cancer victims don’t have the same incentives to keep anyone from knowing their loved one has cancer. Protecting themselves from the unspoken charge of moral bankruptcy by association isn’t a top concern of the families of cancer patients.

Other diseases, like cancer or ALS or a stroke, don’t cause its victims to commit heinous crimes.  You don’t see a breast cancer victim as the lead-in story on the nightly news because she murdered a bunch of school children. You don’t hear about a stroke victim trying to assassinate the President. A lung cancer victim doesn’t jump off a bridge to get away from the voices in his head. And yet the connection between these types of actions and mental illness, if the news media even bothers to make one, is voyeuristic rather than sympathetic.

People with cancer or ALS or all of the other diseases are aware that they are ill and need treatment for that illness.  In many mental illness cases, this is not true. The mentally ill patient, in many cases, has no insight into the fact that he is mentally ill and need treatment.

No legitimate insurance company would dare decline to authorize or pay  for mainstream treatment of a cancer victim, but most insurance companies have little or no such coverage for mainstream treatment of mental illness, reasoning that it isn’t, after all, a real physical illness. If they do cover it, it’s under a separate policy from “physical” health, called “Behavioral Mental Health”, and the payment for treatment and disability from the disease is very limited.  We don’t see major insurance companies splitting off cancer from a list of diseases, calling it “Cell Divisional Health”, severely restricting its access, and farming out its administration to an entirely separate company.

When it comes time for hospitalization, there isn’t a question of whether a cancer victim or stroke victim even needs to go to a hospital. If they’re seriously ill, a cancer patient doesn’t have to be at death’s door before he’s admitted to the hospital. But a mentally ill victim has to either be about to hurt or kill himself or others (as determined by a third party) or needs to have tried (and failed) to kill himself before a mental hospital will consider admitting him.

If they’re hemorrhaging, but not near death, a cancer patient isn’t turned away for lack of space. Cancer patients don’t have to wait until there’s room for them at a hospital. Unlike hospital space for the mentally ill, hospital space for cancer victims hasn’t decreased over the past 20 years.

Alzheimer’s patients aren’t routinely discharged from hospitals onto the streets, left to fend for themselves. Cancer patients aren’t routinely discharged before they are stabilized. And yet the mentally ill are routinely discharged out onto the streets while they are still unwell all of the time. Who do you think the homeless people are?

The cancer patient doesn’t have to give up his civil rights in order to be treated. He can leave the hospital whenever he wants to. But in order for a mentally ill patient to be treated, he has to give up his civil rights. Mental patients are locked in, physically unable to leave the hospital until someone else- the attending psychiatrist- says they can go- however long that takes.

Once in a hospital, a cancer patient has the option to discontinue medication at any time. Again, a cancer patient doesn’t have to give up his civil rights in order to be treated.  Mentally ill patients, on the other hand, must leave their civil rights at the door when they enter a mental hospital. Whether they want to or not, they are forced to continue medication while they are hospitalized. That is the treatment.

Comparing the physical pain of the cancer or the effects of cancer treatment with the effects of mental illness is in some ways like comparing apples to oranges.  Whereas the cancer victim fights for her life, the severely depressed victim fights to kill herself.  Is the physical pain of cancer worse than the emotional pain of continually hearing voices in your head nonstop? Is radiation sickness worse than lithium side effects?  Is prostate cancer preferable to schizophrenia?

I’m not trying in any way to minimize the pain and suffering that these diseases engender. My point is that each of these diseases –all of them- including mental illness-engenders tremendous pain and suffering. None of them- including mental illness- is any less severe than any other.

For too long, mental illness has been a quiet disease. Quietly terrible, but still quiet.  This is a disease- or a family of diseases- on par with cancer and ALS and strokes, and yet there is a huge vacuum out there. Nobody even thinks about mental illness as a true physical disease. It’s not even on the radar. This needs to change. We need to raise people’s consciousness about mental illness, and give it the parity it deserves.  We’ll know we’ve done our job when “mental illness” takes its rightful place on the list of Terrible Diseases in the public consciousness.

My Own Voices Return (Again) July 7, 2010

Posted by Crazy Mermaid in Hallucinations, Hearing Voices, mental illness, Mental Illness and Medication.
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My sleep cycle got off a few days ago when we were camping.  I was sleep-deprived more or less when a 1 ½ year old boy belonging to one of the families we were with kept waking up about every 2 hours during the night. Combined with the inconvenience of sleeping in a tent in a strange place, my sleep and my schedule took a severe beating which meant that my stress level increased proportionally.  Not surprisingly, I began hearing voices again.

Although hearing voices would be scary to the average individual, someone like me, who has a history of hearing voices, isn’t frightened by them for several reasons. The first reason is that they’re relatively comfortable- like an old shoe. I’ve had them before, and I will probably have them again.  Secondly, thanks to my wonderful psychiatrist and counselor, I know that with proper treatment they will go away. Just how severe that treatment has to be to get them to leave is the real question.  Can I just reduce the stress and make them go away by myself, or do we need to escalate treatment up to the Haldol level or commitment to the mental hospital level?

Whenever I hear voices, I have an agreement with my family and physician. I must always tell my husband and sister, whether I want to or not. I realize that not telling them is a slippery slope, leading me back to the point where I once again get comfortable with them.  I want to discourage that mindset as soon as it starts to rear its ugly head.

Regardless of my own relative lack of concern, learning that I’m hearing voices again is always scary from my family’s perspective. Besides my family’s fear factor, one of the more unfortunate and upsetting points about hearing voices (for me) is that once again I have to come face to face with the fact that I have a mental illness.

Before the camping trip, I was feeling so good that it was easy to convince myself that I was no longer mentally ill.  Maybe, in fact, I had never really been mentally ill. Maybe it was all a mistake. Based on the relative stability of a couple of weeks or months,  I had convinced myself that I no longer needed any counseling and that soon I would be going off my meds entirely.

But now with this latest episode bringing back the voices, I must once again confront the fact that obviously am not “cured” like I thought I was, and that’s a major disappointment for me.   I really had myself convinced that I wasn’t sick any more.  I believed that I had grown out of my illness (or was misdiagnosed), and that very shortly I would be going back to my old way of living and working.   I thought I didn’t need my medications anymore because I was no longer mentally ill.  Things were going so well before the camping trip vacation that I really thought I had the illness under control and maybe whipped for good.  It was so nice to feel that good, looking forward to an illness-free future.

My latest episode of hearing voices returns me back to the point where once again I have to acknowledge that I have a mental illness and that I have certain limitations in my daily living.  I have to adhere to those restrictions or else I will find myself going back into my old psychotic ways.  Because I took action right away, although the voices came back, they weren’t nearly as loud and dominating as they used to be.  But when they returned, I realized that if I didn’t do something about them (get more sleep and reduce my stress levels as much as possible) the voices would increase in loudness and frequency, and it’s possible that I would find myself hospitalized once again.

And so yesterday afternoon I began my program of doing nothing, and today I continued that program.  The only thing I accomplished today was doing a blog on anosognosia, which is the inability of a person with a mental illness to realize they are ill.  It’s ironic that I did that blog, since I believed based on my own personal lack of symptoms for several weeks that I no longer had a mental illness. Because I had been symptom-free for so long,  I was so sure that I was no longer mentally ill that I was prepared to stop my medication because I believed that I was close to being “cured”.

It’s easy for me to understand how someone with a mental illness can be in denial.  It’s  a lack of symptoms kind of thing.  I think that’s what a lot of people on medication get caught up in.  It’s a logical point: If I take medication and I get better, then I actually get well entirely and no longer need that medication. Therefore, I can discontinue its use and return to my old way of life. It’s a cause and effect thing. No symptoms for a certain amount of time means that I am no longer ill.  It’s such a symptom-driven illness that the absence of the symptoms indicates an absence of the illness itself.

And so, it’s not particularly surprising to learn that roughly 70 percent of people with mental illness stop taking their medication at some point in their life.  We so badly want to be cured that we wish ourselves into being cured.  In my own case, I was really, truly symptom-free for weeks  (which is forever in the mental illness realm).  No voices, not even a hint.  And with a little lack of sleep and stress, a cocktail of mental illness symptoms raised its ugly head.  That fast.

Of course, going off my medication, had I decided to go that route, would have doubtlessly put me back into a severe case of psychosis, bringing me to the point (possibly) of hospitalization.  At the end of the day, I would have returned to a much stronger cocktail of medication designed to make the psychosis, whatever its form, go away, along with the voices that would surely accompany it.  It likely wouldn’t have taken me long to fall back into that abyss of voices and psychosis. And what a horrible thing that would have been to do to my family.  So I’m glad that I had that little episode while camping. It kept me from having bigger problems than just a few voices.