People With Schizophrenia Who Recover

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.

To which I responded: Antipsychotics cause loss of brain matter.

 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:

Fabulous People with Schizophrenia

The Power of Apology

First, a nod to our excrutiatingly polite neighbors to the north, on the Power of Apology from Scott Stratton:

Next, inspired by Scott and in honor of Magna Carta Day - a rerun of last year's Entitled to an Apology?

Perhaps because a central feature of both hypomania and depression is irritability, and because a characteristic of the "bipolar temperament" is a certain tendency toward an attitude of entitlement, interpersonal disputes tend to be common in this patient population. -- Ellen Frank, Treating Bipolar Disorder

We Are On Our Own

Last week I was part of a group that was confronted with a psychiatric crisis in a visitor.  This group had never been called upon in this way.  But among our ranks we had enough experience of psychiatric crisis that:


1) We were determined we would help a stranger; and
2) We knew how to do it.

Part of the story was that inevitable series of telephone calls to offices in 24 hour institutions that were closed.  When flesh and blood was finally located, the response was rude, ineffective and dismissive.

When I debriefed with my therapist, she expected my frustration at calls for help that did not yield help.  That is one of my therapy themes -- a cognitive schema, as a former cognitive therapist called it.  I surprised my new therapist and surprised myself with my response.  No, I didn't expect help.  We are on our own.

Entitled to an Apology?

Perhaps because a central feature of both hypomania and depression is irritability, and because a characteristic of the "bipolar temperament" is a certain tendency toward an attitude of entitlement, interpersonal disputes tend to be common in this patient population. -- Ellen Frank, Treating Bipolar Disorder

Frank goes on to explain how this attitude of entitlement plays out in the clinical setting.  Unlike the usually self-effacing patient with Major Depressive Disorder, grateful for any scrap of attention, people with bipolar get irritated at imagined slights, such as when the therapist cancels an appointment, or is late.  Sometimes, the only way the therapist can maintain the therapeutic relationship is to go ahead and apologize for these imagined slights.

Yup, stick that fork in the 220 volt socket again.

Real Mental Health Advocacy - We Have Begun

Okay, so I just blew away this week's post.  Sigh.

Instead, I will honor the people in Chicago, who have tried every form of education, conversation and persuasion they could devise to convince Mayor Rahm Emanuel not to close six of the city's twelve mental health centers.  Finally, they staged an occupation.  For seven hours, they held the Woodlawn Mental Health Center, while Occupy Chicago gave support from outside the clinic.

They are my heroes.

Read the remarkable details here.  The videos seem to be missing from the text.  Here is the link to the story as recorded in stages on youtube.

Changing Attitudes - Building the Therapeutic Relationship

What if your chart had your picture on it?  What if, as your doctor picked up your file from the top of the pile, just before you walk in the room, there on the cover is a picture of you from when you were well?

Maybe several pictures, images of the life your illness or your meds took from you?  Images of the life you manage to live anyway?  What if your doctor could see, not only your diagnosis, but also -- you?

What if your doctor knew what you still can do?

Okay, the chart is digital where I go for care.  My photos could come up as a slide show!

I want my chart to include my degree from Reed College.  It would come up as soon as the doc hit escape from the slide show.  If your doctor still uses paper file folders, your degree or certificate or major award could be stapled to the inside left cover, right across from the case notes of last month's visit.

Maybe my degree from Yale would be more impressive.  It's a Master's, and it's in Latin.  But I want my doctor to know I went to school with Steve Jobs.  Just as he studied Shakespeare, because scientists study Shakespeare where I went to college, I studied science.  At Reed College even poets are required to learn how to evaluate a research design.  First you read the method.  If the method is flawed, the conclusion is still just somebody's fancy.  You needn't bother reading the rest.

So I know how to detect bullshit when the doctor is parroting back at me the bullshit he/she heard from the sales rep.  I want my doctor to remember that.  It will save us both a lot of time. 

You Want That Placebo Effect

Here is what is at stake in my photo fantasy:

One out of every nine people in the US took antidepressants in 2005-2008, one of every four women aged 40-59.  So how are they working for you?  80% of their success, if they are indeed successful, comes from the placebo effect, the healing power released in your body by your own belief that they will work.

Now you are more likely to believe if you have confidence in the doctor that prescribed them.  Given that you are taking antidepressants in hopes of alleviating some sort of suffering, and given that they cause their own sort of suffering, it is clearly in your interest to maximize the placebo effect, so that the benefits indeed outweigh the costs.

Recently I reported a study that discovered a particular wrinkle in this issue.  You get better results from the same med depending on who your doctor is.  In fact, some doctors get better results from placebos than other doctors get from the medication.  How about that!

It's all about the therapeutic alliance, the relationship between the doctor and the patient.  The relationship carries the weight of the healing. 

All I'm Asking is For A Little Respect

So my recent post, The Therapeutic Alliance - Or Not identifies one factor that I believe is critical to the therapeutic alliance, whether the doctor respects the patient.  We have greater trust in doctors who respect us, who think that we, our lives and our bodies are important, and who demonstrate that respect in specific ways.

I generally do not find that respect reflected in the writings of psychopharmacologists, doctors who treat psychological disease with pharmacology.  I hardly ever find it in anyone who writes about compliance, getting us to take our meds.  I do not find it in most writing about suicide.

Fortunately, my current psychiatrist does give me good examples of how to build trust by demonstrating respect.  So I don't have to invent this post all myself.

My doctor apologizes when common social convention calls for an apology.  My doctor listens to me and pays attention to how my illness and how my meds are affecting the life I want to live.  My doctor prescribes and changes her prescriptions based on the information I give her.  My doctor educates me about my condition, what different medications can do, and how well-founded the claims made for these medications actually are.  My doctor writes things down for me when I am having trouble remembering.  My doctor knows that I will make my own decision.  She asks, What do you want to do? 

Common Ground  Between Doctor And Patient

I suspect this next example is controversial.  My doctor establishes common ground.  We don't spend time talking about her personal life.  But she has photos of her children in her office and pictures they have drawn.

In the early history of analytical psychiatry, doctors were god-like figures who cured by force of their personalities.  Whether that ever was a good idea, the conditions under which this god-like distance was supposed to work no longer prevail, i.e., years of couch time to develop and explore the transferences and counter-transferences.

Nowadays, you could make, I have been making a case that The-Doctor-Knows-Best approach sets up the compliance power struggle that doctors are going to lose, they are going to lose, they might as well give it up, because they are going to lose.

But if my doctor and I have something in common, in this case motherhood, then the distance between us is reduced.  I can imagine that we share some values, an understanding.

Once my wife was in a restaurant that you could call acoustically alive, when she heard a toddler having a full metal jacket meltdown.  She turned, and every person in the room turned to look.  She recognized the toddler who was having the full metal jacket meltdown.  She had seen his photo in my doctor's office.  Sure enough, her eyes met my doctor's, who looked for all the world like the mother of a toddler who was having a full metal jacket meltdown in a restaurant that is particularly acoustically alive.

When I get a little crazy in the head, when my hippocampus takes me on one of those time travel trips and I confuse my current doctor with the one who doesn't do relationships, when I am scared and angry because the latest chemistry experiment is making me sick and I don't believe she will hear me, then the story about that toddler brings me back to reality.  When I see the picture of that child in her office, I remember she is not god-like.  We have some experiences in common.  We are on the same side.

The story even has the power to recall me to my own competence.  When my son used to have a full metal jacket meltdown in some public place (not often, but it happened), I discovered that if I turned him upside down and held him by his ankles, he would gain a different perspective on his world and whatever it was that had disturbed him so.  This different perspective seemed to make him thoughtful.  At least it made him quiet.

This is Car Salesmanship 101, by the way.  When you walk onto a successful car lot, within three minutes a salesperson will have established some sort of connection with you, a place where your lives or interests intersect.  Doctors are not salespersons, you say?  Then why are patients called consumers?

Caveat: Behaviors Are Not Enough

But behavior isn't enough.  Malcolm Gladwell's Blink: The Power of Thinking Without Thinking reveals how our adaptive unconscious helps us make judgments in an instant.  Sometimes this capacity is essential for survival.  Sometimes it makes mistakes.  Sometimes it can be brought into consciousness and trained.

Gladwell defines an instant as a unit of time measuring two seconds.  Those of us with extensive trauma histories, who are the most treatment-resistent, don't need two seconds.  We learned to jump, to duck, to cover on the briefest freeze of a smile or glaze in an eye, a nanosecond of body language.

That's called hypervigilance, and our care providers want to treat us out of it.  Hypervigilance does take a lot of energy, and can interfere with recovery.  But treatment can be dangerous, too.  And while it may be helpful to train our adaptive unconscious, it may not be in our best interest to lose this skill, even if it makes it easier for our caregivers to pull one over on us, such as, make us think that they respect us, nut cases that we are.

No, learning the behaviors of respect is a start, and the bottom line for competent care.  But the truth behind the behaviors lies naked before our hypervigilant eyes.  Better than learned respectful behavior is genuinely held respectful attitude.  Don't just behave as though you respect me.  Respect me!

Now really, patients have to cut our care givers some slack.  Remember, they see us at our worst.  They are not in the room when we are managing a meeting, delivering a speech, making a gingerbread house, organizing a party, taking care of the kids.  No, they see us sick, focused on our symptoms, angry about the last med and the doc who prescribed it, anxious about the next, ranting, delusional, scared...

These are not encounters that build respect.  We don't think much of ourselves when we display these behaviors.  Why would they?  Based on their extensive, though exceedingly narrow experience of people with mental illness, their adaptive unconscious is pretty hypervigilant around us, too.  Not always so unconscious.  Mental health workers experience five times the national average rate of violence on the job.  They write articles, develop protocols, and design buildings to protect themselves.  From us.

Hold on, Goodfellow -- save something for another post!

Changing Attitudes - Building Alliances

Experience forms attitudes; experience can change attitudes.

Another psychiatrist I know who demonstrates respect is on the board of the local NAMI chapter.  He partners with board members, including people who have mental illness, for common goals.  He spends normal time with people with mental illness.  Well, at least he occasionally has coffee with me.  We talked once about my symptoms in his office.  But we left the office and had coffee where normal people have coffee.  When I saw him once interacting with someone who was displaying delusions, I was struck by the respect he demonstrated.  I learned from him how to behave respectfully toward people who have delusions.

I began this post with an idea about putting in front of psychiatrists images of their patients that are positive, that reflect the larger reality of our lives, images of recovery and wholeness and worth.  It's all about how to help them learn to respect us.

Doctors and patients really do need to get on the same side.  The best doctors understand that to get there, they, too, need to move.  And first, from the inside.

photo of baptism by Malaura Jarvis

Team Prozac Monologues NAMI Walk photo by Judy

photo of gingerbread house by Margaret Doke

flair by facebook.com

book jacket by amazon.com

logo for Occupational Safety and Health Administration in public domain

college graduation photo by Jenny Krch

Does Your Psychiatrist Respect You?

My biggest surprise since becoming a mental health blogger -- how little self-reflection psychiatrists do.

Healer, Know Thyself

Clinical education for clergy usually happens in a hospital.  For every patient contact hour, we would spend another hour writing verbatims (one third what the patient and the chaplain said, one third what the chaplain was thinking, one third what the chaplain was feeling), and then another hour discussing what we were thinking and feeling in group or individual supervision.

Continuing education for clergy includes more large doses of self-reflection.  I don't know how many times I have created my genogram, a family tree that includes the dynamics of relationships: alliances, roles, conflicts, secrets, patterns... for my first family counseling course, for a seminar on family systems in congregations, for doctoral work in congregational development, while training congregational leaders to show them how to do their own.  I once even made a genogram of a congregation and key diocesan figures when I took a situation to a consultant.

In this example, Sarah is extremely focused on her son, while Abraham and Isaac are distant; the brothers are in conflict.  The pattern repeats in the next generation.

Clergy groups do critical incident reports in support groups.  Similar reflection.  What is my part in this mess?  How do my needs and fears interact with somebody else's needs and fears?  How do I get out of the blame game?  How can I tap into my sources of strength (faith, friends, scripture, sacraments, grace, knowledge...) to get myself unstuck?

The point is to figure out how my issues interact with anybody else's.  If I can sort out my own stuff, I can be a healthier presence in my relationships with others, less bound by unhealthy patterns, more able to find creative solutions.

The two most helpful discoveries I have made from these exercises: sometimes my troubles at work have come from my repeating a script from my childhood, a conflict or alliance with a person who is no longer in the room; sometimes my troubles at work have come from inadvertently stumbling into a power struggle, when my first-born status runs into somebody else's position of power.

When I discover what is going on in me, and hence what is going on in the relationship, I can change my own behavior to defy the script.  I can do something unexpected that helps me and maybe even the other person break out of his/her script.  It works best if this unexpected behavior is funny.

Psychopharmacologists Don't Do Self-Reflection

It used to be that people training to be psychiatrists did psychoanalysis.  Then the mind was replaced by the medical model of mental illness, and this requirement went by the board.  Now it's all about the meds.

But we don't take the meds.  We don't.  The numbers differ for a variety of meds.  In one study, three months out from the original prescription for antidepressants, 72% of us have quit.

Psychiatrists call this noncompliance.   They write myriads of articles to explain the numbers, saying about us, they miss their highs or they lack insight.  These articles make no reference to what patients say about why we quit our meds, the meds make us sick and the meds don't work.  [That last link is to a rare exception.]

Systems theory would call these articles evidence of a power struggle.  Psychotherapy might recognize counter-transference, the feelings, in this case very negative feelings psychiatrists have toward patients who do not do what we are told or, even if we do comply, refuse to get better anyway.

Caveat

My therapist was surprised when I commented on how little self-reflection psychiatrists do.  Her field, psychotherapy is all over the counter-transference-type issues.  And there still are a few psychiatrists who follow the old model.  At the Gabbard Center, two of the three who interviewed me even had couches, not living room-type, but New Yorker-cartoon-psychiatrist-type couches.  I had never seen one before!

So I have to qualify my comment.  My reading has primarily been in the field of psychopharmacology, as in, the psychiatrist who told me, I don't do relationships.  I treat psychological illness with pharmacology.

It occurs to me that patients might be better off if this kind of psychiatrist skipped medical school and went to pharmacy school instead, with a specialty in psychopharmacology.  There they might learn about adverse effects and the consequences of adding one med on top of the other, to make it work better or to counteract its adverse effects, resulting in iatrogenic disease, the disease that is caused by the treatment itself.

You know, that overweight zombie you became, stuck on the sofa, unable to complete a sentence, until you die 10-25 years before your time on account of complications from liver disease, diabetes, and cardiovascular disease, on account of you actually took the meds that were prescribed..  Death by medical treatment.


The Power Struggle

The thing is, in this particular power struggle over medication, while psychiatrists think they have more education, more knowledge, more insight, more prestige, more standing, while they think they are the parent in this relationship and the patient is the child (yes, they do think this, they really do, they betray it in every printed word), all these things that make psychiatrists think they know best and should have more say matters not when it comes to whether that pill will go into the patient's mouth and down the patient's throat.  Short of physical restraints and a hypodermic needle (which every parent of a toddler in a grocery store has had occasion to covet), the patient is going to win this power struggle.

So why not recognize the power struggle for what it is, and give it up?  As long as you are bound to lose it, why not do something else instead?

I Trust My Psychiatrist

If, after all that, you still remember how I got onto this topic last week, and where I said I was going, then your cognitive functioning is not as bad as you thought.

I said when I feel respected by my psychiatrist, I am more willing to trust her with my body.  I promised I would name some behaviors that she exhibits that build the therapeutic alliance, notwithstanding the lack of respect that I find in vast numbers of articles by psychiatrists who write about why patients don't take our meds.

Collaboration

She asks me, What do you want to do?

When we have a med check, we exchange information.  She listens to my report about what I am doing with my meds, how they are helping and hurting my life, and what kind of life I hope to live.  Then I listen while she gives me information about how the things work, why I might be having certain problems, what might be possible.  I tell her my concerns, she tells me hers.

I know that she won't prescribe things that she thinks will be harmful, because she remembers how sensitive my body seems to be to these things, and prescribes accordingly.  She knows that I won't take things that I think will be harmful, because, well, nobody does, not for long.  She expects that I will do my own research and make my own decision, because she remembers that I know my stuff.

When I am not in good shape, she does not confuse a current cognitive deficit with lack of intelligence.  So she makes lists, writes down the major points.  I am still in charge.  She asks, What do you want to do?  I sometimes say, I don't know.  What do you recommend?  But she always asks, What do you want to do?

As it happens, I don't take antidepressants, antipsychotics or mood stabilizers anymore, because I never found one that worked and was tolerable.  But we worked together to reach that decision and to develop an alternative plan.

With my previous psychiatrists, I just stopped.  I made the follow-up appointment, then called the machine after hours to cancel, and stopped.  In a sense, that was childish, not to confront the doctor directly.  But honestly, when I did confront the doctor directly, I got treated like a child.

My current psychiatrist continues to participate in my decisions, and I continue to rely on her for help managing symptoms with rescue meds, because we are partners.

What About Lack Of Insight, Denial, and Stupidity?

So, I am on top of this.  I am motivated and informed.  I have lots of resources that support my recovery and carry me when I flag.  I have good insurance and get more than ten minutes for a med check.  I am not the typical patient in the typical setting.  I can imagine a psychiatrist reading this and saying, Collaboration just won't work in my setting.

So, does what you are doing work?

Follow up question: does blaming your patient work?

What About Frustration, Worry, Disappointment?

What if psychopharmacologists spent more time acknowledging that their work conditions are lousy, they are anxious for their patients, and they know they can't deliver on the promises of these miracle meds?  What if they wrote articles that addressed these issues, and how their frustration, worry and disappointment get taken out on their patients?

Maybe they could discover their patients share these frustrations, worries, and disappointments. with them.  Maybe they could figure out something new to do.

Respect

Examining ones own stuff takes work, and is not pretty.  Coming up with new behaviors that display respect and build a therapeutic alliance, experimenting, trying to change habits -- all of it is hard work.  And it might not make a difference anyway, if it's just behavior.  Even if it's respectful behavior.  If we can tell that the psychiatrist is faking it, is parroting a line.

Coming soon -- I will up the ante and write about:

Attitudes!

genogram of my own creation, please give attribution

flair from facebook.com

photo of mirror by Jurii and used under the Creative Commons Attribution 3.0 Unported license

clip art of tug of war by Microsoft Office

illustration of A Zombie, at twilight, in a field of cane sugar of Haïti by Jean-Noël Lafargue used under the Free Art License

sketch of hands shaking by Danieldnm and in the public domain