March 13, 2006
By Pamela Spiro Wagner
I could be your daughter or your son, your sister or brother, your mother or father, your friend or your neighbor. I suffer from schizophrenia.
For decades, I’ve lived, along with almost three million other people with schizophrenia, in a desolate, dark, little room with a large padlock on the door.
The room is stigma, the darkness is fear and the lock is ignorance.
I want to speak to you today, having had schizophrenia for decades, to break down the walls of fear and suspicion, unburden you of the myths and mysteries that lead to stigma and get you open that door. I’d like to tell you some reasons why medication compliance is such a difficult issue in schizophrenia and a little about how I began to recover.
Medication. What a struggle! I was never going to take medication. Medication meant I was sick. I hated the label, I hated the very idea of a label. But I hated the side effects most. Never mind what medication did FOR me, I hated what it did TO me.
For starters, there was: dullness, deadness, lack of motivation, feelings of impending doom. Then: not being able to swallow my saliva, overwhelming sedation, a sixty-to-seventy pound weight gain. Drooling or dry mouth, stiffness or shaking, agonizing internal restlessness, movement disorders...Need I go on?
Well, given all that, what would you do? Time after time, I stopped taking first one pill then another and another...
Predictably, I became psychotic again. People with schizophrenia are faced with this all the time. Either they stay psychotic or they suffer side effects that can sometimes be as bad or worse than the illness.
If you know someone who has been psychotic, you’ve seen what a horrendous state it is, so this might seem hard to believe. How could side effects be worse than psychosis?
In fact, sometimes the side effects are life threatening and then the medication has to be stopped even when it works. Side effects have to be reckoned with or compliance will be zilch, even with meds that obviously help.
The right medication can help, though, and when the side effects are tolerable, it can make the difference between chronic illness and recovery. I wouldn’t be standing here to day without it.
Tolerable, though, is the operative word. I don’t have to believe my pills help me; I’ve promised to take them anyway. If I didn’t feel they were more harmless than harmful, in other words, if the side effects weren’t tolerable, I couldn’t have made that promise to begin with.
But “medication compliance” is iffy for other reasons as well. Some take medication until they feel better, then stop it because they feel better, only to get sick again. This sets up a destructive cycle into which they often have little insight. Other people with schizophrenia do not believe their difficulties constitute an illness. If the CIA and FBI control me through a microchip implanted in my tooth, how will a pill solve that?
If I hear invisible voices that sound real, and think bizarre thoughts that feel true, how is medication even relevant? The solution is to get rid of the radio in the wall or go to the Middle East, find 22 linguists, and translate Gray Crinkled Paper.
I asked my dentist about my tooth. For a moment, he looked taken aback, but he regained his composure and answered with something like, “I understand you believe there’s a microchip in your tooth. I don’t think that’s possible. I think it’s a symptom of your illness. But I’ll take a look if it will make you feel better.” He was a pro.
The technician, on the other hand, passed over the tray of probes then backed a safe distance away. From that appointment on, she made sure I was sequestered in the last cubicle as soon as I arrived and made me stay there instead of the waiting room. Stigma.
Did you know that stigma originally meant the brand from a hot iron that they would burn into a wrongdoer’s face as a mark of shame? That’s why many young people won’t take medication. Because it sets them off from their peers, it brands them as different. But all of us with schizophrenia are stigmatized when people mock “mental patients,” or “schizos” or imply that we are axe-murderers just waiting to happen.
The effect of ignorance is the stigma that keeps us locked away where no one has to see or acknowledge us. Out of sight being out of mind, the mayors clean city streets of us and put us away in shelters, supposedly for our own good or imprison us for minor infractions and lower the crime rate.
But someone needs to stand up and ask where we’ve gone. Have we been sheltered or imprisoned, have we been helped or just hidden?
Side effects, lack of insight, stigma, -- side effects topping the list – any and all can lead someone to stop taking medication and compliance is almost always necessary for recovery. Talk therapy is crucial anyway. People used to think, Oh, schizophrenia, just give him some pills and that’s as good as he’s going to get. He doesn’t need to talk to a therapist. Why, talking might even be bad for him! This sort of mentality helped no one. People with schizophrenia are often frightened and lonely. At the very least they need someone to talk to.
But discussion can be even more profitable. My own doctor told me ad infinitum that I have an illness, a brain disease. Again and again, she insisted that hallucinations originate in the brain and that delusions are not real just because they feel real. I needed to hear this, though it took years to sink in. She always treated me not as a schizophrenic, but as a person, a full and complete human being with an illness that happened to be called schizophrenia. This is important. We don’t call a heart attack victim a cardiac, do we? Or a person suffering from meningitis – another brain disease -- a meningitic. No illness is all there is to a person, no illness erases the human being inside.
In September, 2004, voices compelled me to pour lighter fluid over my left leg and set it on fire. I had 3rd degree burns, skin grafts, the whole terrible shebang. February 2005, in the hospital again. I’d been admitted to psychiatric units many many times, by then, for a total of at least 8 years. This time voices yelled at me to burn the rest of my body.
That was it. I’d been tied down, locked in, shot up and kept inside for the last time. I had to decide: live or die.
One evening Lynnie visited. She was tired of it all too. She said, “Listen, this is what I tell my patients: You can always go down the old familiar road. You’ve taken it a million times. Why don’t you try something new, just for a change?” She called this ‘bushwhacking.’ I could always switch back to my old way. It was always there. But bushwhacking a brand new path for myself might bring me somewhere I liked better.
It’s still a mystery to me why this took, when nothing had so many times before. Maybe I just had to be ready to hear it. I decided I would try her advice. What did I have to lose? My newly bushwhacked path was to follow doctor’s orders and take every one of the medications prescribed me, as prescribed, without skipping a single dose. For a while at least, see where that got me.
After more than three decades of illness, recovery is still new to me. I didn’t expect it and it still takes me by surprise to be able to say, “No, I don’t hear voices much any more.” A lot of life passed me by in 35 years. After all is said and done, I have to realize that I’m a 53 year old on the outside but an adolescent inside and I have some growing up to do.
Hard as it sometimes is, I’ve chosen life, and that means I go on, no matter what. But when I look back, I don’t know how I survived all those years. I tried many times to avoid living. I tried to become a statistic. But Lynnie’s hope and Lynnie’s faith and Lynnie’s love pierced the darkness. It made a life’s worth of difference.
Life is for living. Today is all we have and all we know. Enjoy what you enjoy; when you suffer, suffer well. Remember: it’s all in the wrist.
Those are not bad lessons, and you can learn them from the same people you keep locked away in that dank little room. We have so much to teach you.
That’s what I mean, you see. Don’t leave us in the dark: wondrous things can happen when the doors open and the walls come down.
By Pamela Spiro Wagner
I could be your daughter or your son, your sister or brother, your mother or father, your friend or your neighbor. I suffer from schizophrenia.
For decades, I’ve lived, along with almost three million other people with schizophrenia, in a desolate, dark, little room with a large padlock on the door.
The room is stigma, the darkness is fear and the lock is ignorance.
I want to speak to you today, having had schizophrenia for decades, to break down the walls of fear and suspicion, unburden you of the myths and mysteries that lead to stigma and get you open that door. I’d like to tell you some reasons why medication compliance is such a difficult issue in schizophrenia and a little about how I began to recover.
Medication. What a struggle! I was never going to take medication. Medication meant I was sick. I hated the label, I hated the very idea of a label. But I hated the side effects most. Never mind what medication did FOR me, I hated what it did TO me.
For starters, there was: dullness, deadness, lack of motivation, feelings of impending doom. Then: not being able to swallow my saliva, overwhelming sedation, a sixty-to-seventy pound weight gain. Drooling or dry mouth, stiffness or shaking, agonizing internal restlessness, movement disorders...Need I go on?
Well, given all that, what would you do? Time after time, I stopped taking first one pill then another and another...
Predictably, I became psychotic again. People with schizophrenia are faced with this all the time. Either they stay psychotic or they suffer side effects that can sometimes be as bad or worse than the illness.
If you know someone who has been psychotic, you’ve seen what a horrendous state it is, so this might seem hard to believe. How could side effects be worse than psychosis?
In fact, sometimes the side effects are life threatening and then the medication has to be stopped even when it works. Side effects have to be reckoned with or compliance will be zilch, even with meds that obviously help.
The right medication can help, though, and when the side effects are tolerable, it can make the difference between chronic illness and recovery. I wouldn’t be standing here to day without it.
Tolerable, though, is the operative word. I don’t have to believe my pills help me; I’ve promised to take them anyway. If I didn’t feel they were more harmless than harmful, in other words, if the side effects weren’t tolerable, I couldn’t have made that promise to begin with.
But “medication compliance” is iffy for other reasons as well. Some take medication until they feel better, then stop it because they feel better, only to get sick again. This sets up a destructive cycle into which they often have little insight. Other people with schizophrenia do not believe their difficulties constitute an illness. If the CIA and FBI control me through a microchip implanted in my tooth, how will a pill solve that?
If I hear invisible voices that sound real, and think bizarre thoughts that feel true, how is medication even relevant? The solution is to get rid of the radio in the wall or go to the Middle East, find 22 linguists, and translate Gray Crinkled Paper.
I asked my dentist about my tooth. For a moment, he looked taken aback, but he regained his composure and answered with something like, “I understand you believe there’s a microchip in your tooth. I don’t think that’s possible. I think it’s a symptom of your illness. But I’ll take a look if it will make you feel better.” He was a pro.
The technician, on the other hand, passed over the tray of probes then backed a safe distance away. From that appointment on, she made sure I was sequestered in the last cubicle as soon as I arrived and made me stay there instead of the waiting room. Stigma.
Did you know that stigma originally meant the brand from a hot iron that they would burn into a wrongdoer’s face as a mark of shame? That’s why many young people won’t take medication. Because it sets them off from their peers, it brands them as different. But all of us with schizophrenia are stigmatized when people mock “mental patients,” or “schizos” or imply that we are axe-murderers just waiting to happen.
The effect of ignorance is the stigma that keeps us locked away where no one has to see or acknowledge us. Out of sight being out of mind, the mayors clean city streets of us and put us away in shelters, supposedly for our own good or imprison us for minor infractions and lower the crime rate.
But someone needs to stand up and ask where we’ve gone. Have we been sheltered or imprisoned, have we been helped or just hidden?
Side effects, lack of insight, stigma, -- side effects topping the list – any and all can lead someone to stop taking medication and compliance is almost always necessary for recovery. Talk therapy is crucial anyway. People used to think, Oh, schizophrenia, just give him some pills and that’s as good as he’s going to get. He doesn’t need to talk to a therapist. Why, talking might even be bad for him! This sort of mentality helped no one. People with schizophrenia are often frightened and lonely. At the very least they need someone to talk to.
But discussion can be even more profitable. My own doctor told me ad infinitum that I have an illness, a brain disease. Again and again, she insisted that hallucinations originate in the brain and that delusions are not real just because they feel real. I needed to hear this, though it took years to sink in. She always treated me not as a schizophrenic, but as a person, a full and complete human being with an illness that happened to be called schizophrenia. This is important. We don’t call a heart attack victim a cardiac, do we? Or a person suffering from meningitis – another brain disease -- a meningitic. No illness is all there is to a person, no illness erases the human being inside.
In September, 2004, voices compelled me to pour lighter fluid over my left leg and set it on fire. I had 3rd degree burns, skin grafts, the whole terrible shebang. February 2005, in the hospital again. I’d been admitted to psychiatric units many many times, by then, for a total of at least 8 years. This time voices yelled at me to burn the rest of my body.
That was it. I’d been tied down, locked in, shot up and kept inside for the last time. I had to decide: live or die.
One evening Lynnie visited. She was tired of it all too. She said, “Listen, this is what I tell my patients: You can always go down the old familiar road. You’ve taken it a million times. Why don’t you try something new, just for a change?” She called this ‘bushwhacking.’ I could always switch back to my old way. It was always there. But bushwhacking a brand new path for myself might bring me somewhere I liked better.
It’s still a mystery to me why this took, when nothing had so many times before. Maybe I just had to be ready to hear it. I decided I would try her advice. What did I have to lose? My newly bushwhacked path was to follow doctor’s orders and take every one of the medications prescribed me, as prescribed, without skipping a single dose. For a while at least, see where that got me.
After more than three decades of illness, recovery is still new to me. I didn’t expect it and it still takes me by surprise to be able to say, “No, I don’t hear voices much any more.” A lot of life passed me by in 35 years. After all is said and done, I have to realize that I’m a 53 year old on the outside but an adolescent inside and I have some growing up to do.
Hard as it sometimes is, I’ve chosen life, and that means I go on, no matter what. But when I look back, I don’t know how I survived all those years. I tried many times to avoid living. I tried to become a statistic. But Lynnie’s hope and Lynnie’s faith and Lynnie’s love pierced the darkness. It made a life’s worth of difference.
Life is for living. Today is all we have and all we know. Enjoy what you enjoy; when you suffer, suffer well. Remember: it’s all in the wrist.
Those are not bad lessons, and you can learn them from the same people you keep locked away in that dank little room. We have so much to teach you.
That’s what I mean, you see. Don’t leave us in the dark: wondrous things can happen when the doors open and the walls come down.
Comments
Take care.
Amber, I am glad you are able to use this in other areas. Keep me updated on the stigma campaign.