What is it like to have depression with psychotic features?
What is a day like inside a psych ward?
What is the psychiatrist thinking?
Sometimes the best way to explore questions like these is in a story. So here is Prozac Monologues' first review of a novel.
Monica Starkman is a psychiatrist at the University of Michigan whose expertise includes psychosomatic disorders, stress, and women's issues around fertility, miscarriage, and obstetrics. In her debut novel, The End of Miracles, she turns her clinical experience to the story of one woman, Margo Kerber, a long-infertile woman who finally conceives, tragically miscarries, and then... unravels.
Do you ever feel like you have holes in your head? Actually,
you do. Ventricles are the spaces between the grey matter (brain cells) and
white matter (wiring that connects the brain cells) in your brain. Depressive
episodes, manic
episodes, and psychosis all
burn up brain tissue, leading to bigger ventricles. (Image: Effects of Western diet on the brain. See companion image, Effects of Mediterranean diet below.)
This loss of brain cells hits the hippocampus (in charge of
memory and emotion regulation) particularly hard. In the early years after my last mental health crisis, I talked about my “Swiss cheese brain.” At my worst, I
lost bills, I lost words, I lost everything my wife said to me on the way out
the door in the morning. She took to writing down what I said I would do before
she got home, never more than two items. I lost the list.
Among the top five factors that limit recovery for people with mental illness:
The false belief that it's all about the medication.
Medication indeed is part of mental illness recovery. It's a bigger part for some mental health issues (like schizophrenia) than others. And its effectiveness varies from drug class to drug class.
I created a bit of a twitter storm when somebody tweeted: Please quote this tweet with a thing that everyone in your field knows and nobody in your industry talks about because it would lead to general chaos.
Last week's post described the research study that demonstrated that claim. The study was led by Nancy C. Andreasen, MD of the University of Iowa Carver College of Medicine. One should not reject antipsychotics on the basis of the study.They do what they are supposed to do. They reduce the positive symptoms (like, psychosis) that cause so much suffering. Payoffs and price tags. But they don't do the whole healing.
I continue this week with a broader picture, the what else of recovery in schizophrenia. This post was first published in 2013 with the title:
What are antipsychotics doing in your brain besides preventing psychosis? This is a report on a study conducted from 1991 to 2009 that looked at that question. Here is the context:
Progressive brain volume changes in schizophrenia are thought to be due principally to the disease. However, recent animal studies indicate that antipsychotics... may also contribute to brain tissue volume decrement. Because antipsychotics are prescribed for long periods for schizophrenia patients and have increasingly widespread use in other psychiatric disorders, it is imperative to determine their long-term effects on the human brain.
Before I get to what the study revealed, here is the investigator, National Medalist of Science winner, Nancy Andreasen.
For Suicide Prevention Awareness Month, guest Margalea Warner tells a story of healing after an attempt and what happened #AfterIDidntKillMyself.
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When I emerged from the gray cloud of near death, the color I woke to was blue. It was an artificial blue, kin to a chlorinated pool water or blue Jell-o or Smurfs. It was a long tube with ridges that seemed to be coming from my face. I couldn't use my mind well enough to know it was a respirator tube. I stared at this blue with bewildered wonder. I did not remember what caused the gray. I did not remember walking away from my job at ten in the morning without asking for time off. I did not remember going through my closet and throwing all my clothing in the dumpster until I had very little left to wear. From deep inside my mind I did remember a room of flickering shadows where I was on trial for witchcraft or for being a bad daughter. I rememberedthe voices saying that I must be executed. I had to be my own executioner. I remember narrator voice saying, “The prisoner is walking into Reliable Drug. She is walking through Health and Beauty. She is walking through First Aid. She is picking up a bottleof rubbing alcohol. She needs the Reliable Drug brand. It will be a reliable drug. She needs it now. No time to think about it.” But what happened next? I couldn’t remember if I obeyed the voices. I wish I could remember if I challenged their distorted thinking. All this forgetting makes perfect sense when you consider the gray that followed it. Fortunately or unfortunately, my mind’s computer made a back up copy in the cloud and replayed it over and over years later.
Anosognosia. It means lack of insight. But from the mouth of Xavier Amador, it’s his ticket. He tells you he knows why your son or daughter won’t take meds. And you are desperate for the answer, aren’t you. Because schizophrenia is a terrible disease and your beloved child is sick and won’t take the meds. The meds would make everything alright. So you are desperate and Xavier Amador throws you a lifeline, a promise that once you understand this unpronounceable word, you can learn how to get your child to take the meds.
He must be right, right? Because he is a psychologist and he can pronounce it. And then the kicker, he also loved somebody with schizophrenia, and he says he got him to take the meds. So NAMI invites him to give the spotlight lecture, and for the rest of the convention, parents hear every other presentation through the filter of this new word that they cannot pronounce.
Here is how you pronounce it:
But really, why bother? It means lack of insight. But you have heard of lack of insight before. And you can pronounce lack of insight. So those words don’t have the power to claim you and get you to buy his book like anosognosia can.
Actually his advice is not bad, once you get past the power play. Stop fighting your sons and daughters, stop trying to convince them that they are sick. Instead, build a relationship.
Listen: reflectively with respect and without judgment
Empathize: strategically with emotions stemming from delusions and anosognosia
Agree: find areas of agreement - abandon the goal of agreeing the person is sick
Partner: on those things you can agree on -- not being ill
I like that advice and have given you a clip of the best part of the presentation.
Now if you will permit a word of advice about relationship-building from somebody who has a mental illness and occasionally does not recognize when her symptoms are showing - ask us why we don’t take our meds.
I met a new friend at last month's NAMI convention. I explained that I wasn't going to this presentation, I had heard it a number of years ago. Then I said, "Ask us why we don't take our meds." She said her son says they make him feel terrible. Bingo.
Now it's true, sometimes people with schizophrenia have delusions that make reality testing difficult. Sometimes people with bipolar in a psychotic or manic state do not recognize that state. I have on occasion rejected my spouse's concerns about my hypomania. And some of us do go off our meds in these temporary states.
But NAMI does a disservice to family members by giving them this fancy word that substitutes for believing what their loved ones tell them. These meds suck. They cause ballooning weight gain, leading to heart disease and metabolic disorders which shorten our poor pathetic lives by ten years on average. They evaporate our sex lives (not that parents want to hear about their children's sex lives.) They fog our brains and drain our energy, leaving us with lives that are not worth living.
Nobody talks about what Nancy Andreasen discovered after fourteen years worth of brain scans of people with schizophrenia -- the more antipsychotics you take, the more brain volume you lose. National Medal of Science recipient, one of the world's foremost experts on schizophrenia, yes, Dr. Andreasen remembered to control for things like severity of illness and alcohol/illicit substance use. Neither affected the results. It was level of dose and length of treatment. The more antipsychotics you take, the more brain volume you lose.
[Funny thing, soon after she published her preliminary results, her funding evaporated.]
A conversation about why we should take our meds anyway really has to include an acknowledgement of the fact that these meds suck. True acknowledgement, not some sort of mental crossing of fingers behind the back, with the all-knowing family members chanting Amador's magic power potion, anosognosia, under their breath.
Half the people who won't take their meds think they are not sick. Those are Amador's numbers and I won't dispute them. And if you don't already know that delusions are not the sort of thing that somebody can be talked out of, then I suppose he does a service to tell you that. But are you sure that's why your loved one doesn't take the meds? He's got a whole ballroom filled with people who now believe it, and who take any other protestation to the contrary as proof of anosognosia.
Okay, that's my first objection to NAMI's sponsorship of Xavier Amador's presentation at not one but two of the three NAMI conventions I have attended. Dammit. His half truths.
The second is that his presentation is a parlor trick. Really, two parlor tricks. The first is that unpronounceable word by which he's got you. He has established the power of his credentials over you. He is the expert.
The really disturbing parlor trick is his demonstration of what a delusion is. He gets a volunteer from the audience. Then they do a role play. The volunteer answers questions about his/her spouse. Then Amador does an "intervention." He tells the volunteer that s/he has been stalking said "spouse," who is not actually married to the volunteer after all. The marriage is a delusion. The volunteer has violated no-contact orders, and they are going to get the person help. There are people just outside the door who are going to take him/her to the hospital. This goes on for a while, demonstrating that Amador is indeed not able to convince the person that the so-called spouse is a delusion. Voila! Anosognosia.
Now one interesting thing about this demonstration is that we are to take it as a demonstration of the power of delusion. But in fact, the volunteer is not deluded. The volunteer genuinely is married to his/her spouse, and ends the demonstration still sure of the fact.
What Amador has actually demonstrated is called gaslighting. The volunteer does not fall under the spell, does not forget the spouse. But the audience does. The audience is convinced that this demonstration demonstrates something more than mental cruelty, that they have learned something about the power of delusion, which, again, never existed in the first place. And he knows that this parlor trick is harmful, because at its conclusion he gives the volunteer advice about how to recover from it.
But there are those who do not fall under the spell, those who have seen it before, in some other psychologist or psychiatrist's office during a professional visit. That's why one person left last month's demonstration sobbing, and why I spent an afternoon in concentrated self-care after my exposure to this presentation years ago.
Here is an example: I call my psychiatrist to get help for symptoms I am having from withdrawal from Effexor. She says I don't have withdrawal symptoms, because it is not possible to become addicted to Effexor in the short time that I took it. I persist, I am having the withdrawal symptoms described in the literature and need help. Now who do you believe? She, after all, has a PhD in psychopharmacology as well as her MD. And I am a self-confessed mental case who insists on stopping this medication that she thinks I should be taking.
I took my wife with me to my last appointment with that psychiatrist, so she could report what happened in the office to my therapist who had slapped a new diagnosis on me based on my own reports.
Amador is not that psychiatrist. He is the trigger for the reliving of that psychiatrist because he uses the same techniques:
1. Establish the extreme power differential, in one case her academic degrees over my addled mental state, in the other his five-syllable word over the uninformed audience who cannot wrap their tongues around it.
2. Take the moral high ground of compassion, trying to help, a position over the other.
3. Say whatever the hell you want.
4. Refer any protestation back to #1.
Yes, there is a kernel here. Stop fighting your loved one. Build the relationship. But the parlor tricks do real damage. Isn't it time to retire this presentation from its position as the major Friday night presentation at NAMI conventions?
It has been there a long time. When it was little, you could hide it. You knew your parents didn't like it when you talked about it. So you guarded it as a secret for the longest time, even with its nasty habit of singeing your fingers. But when the couch caught fire, they knew, and insisted you get help.
They want you to get rid of the dragon. Some of them think you can. Others think you can tranquilize it, and the couch will never catch fire again, and nobody need ever know you have a dragon in the house.
Iron Rule #1: You cannot get rid of the dragon. It is here to stay.
I sat next to the young man as he told his story in Peer to Peer. Honestly, he scared me. I was new to the loony world. I was getting less scared of people like me (and through them, eventually less scared of me). But I was still scared of people with schizophrenia. And this one, especially. The others had a grip. My young man had missed a session or two, not yet stable, like, able to tolerate a large room with twenty people stretched around big tables.
He whispered. They asked him to speak up, but the longer he talked, stretching the three-minute limit to ten or fifteen, the softer his voice got. I strained to hear him. I was the only person in the room who could. The story rambled, hitchhiking around obstacles and through obscure events. If he hadn't whispered, if I hadn't strained so hard to hear the words, I would have missed it. I would have missed him.
It actually made sense. There was a flow. The connections were loose, granted. But if I got in the canoe with him, I could ride the river as he paddled through his quest to make sense of it.
That was my introduction to the inner world of schizophrenia. My life is richer for it. Yours could be, too.
Monica Starkman is a psychiatrist at the University of Michigan whose expertise includes psychosomatic disorders, stress, and women's issues around fertility, miscarriage, and obstetrics. In her debut novel, The End of Miracles, she turns her clinical experience to the story of one woman, Margo Kerber, a long-infertile woman who finally conceives, tragically miscarries, and then... unravels.
