Temple Grandin on DSM-5: “Sounds like diagnosis by committee” – Salon.com

http://www.salon.com/2013/05/18/temple_grandin_on_dsm_5_sounds_like_diagnosis_by_committee/singleton/

When stupid cures

I met a lady the other day who said she had bipolar disorder.  She had cured the bipolar by becoming a drug addict.  Her arms, her legs…..everywhere was literally littered with the track marks that testified to the choices she had made.

She told me that she had an infinite capacity for stupidity.  She could convince herself that anything made sense….anything she wanted.  She had borrowed money from her son for a fix.  He said “Mom if I give you this money isnt it the same as giving you the drugs….”  She cried and begged.  He gave her the money.

She is going into detox.  She says it is the first time for real.  She says soon there will be nothing left to save.  She is afraid maybe all ready too late.

We talked for a long time.  Maybe most of us have a similar relationship to stupidity.  She is ready to try.  Her son loves her and stands behind her.  She is terrified of the pain ahead.  But most of all she is terrified of  herself.

I cant wonder how often many of us try to cure life with stupidity.  I wonder why it is so easy to believe what we want is good for us and so hard to believe that what we need is worth the effort.

On being carried

I struggle.  A lot.

Many good things have happened in my life and continue to happen.  But many hard things remain hard and maybe always will be.  Somedays balance seems so hard to find.  Later I am normally appalled at my foolishness and how I let things that are not so big become gigantic but it does little good to beat myself up.  Maybe all of us need to learn to forgive ourselves for being human.  I dont think you can try so hard you are not.

Community is such a necessity.  Many times we seem content to let it be a place of masquerade where people meet to tell each other how smart they, how rich they are, how important they, how loving they are, how right they are…… Sometimes we think others are our best opportunity to try to convince ourselves we are what we hope we are. 

Community is about being cared for as we are.  Sometimes it is about being carried and about carrying.

I know sometimes I need to be carried.  It is good to know when you are confused, scared and beaten down that no matter how lost you feel you can be found in the arms of others.

The violence of realized potential

To tell someone that they need to accept the fact that they have realized their potential and they need to accept the reality of that is often an act of unintended violence.  A friend described how it worked in her life.

She had struggled with physical disability and mental health issues her entire life.  She had known many tragedies and catastrophes, but had also known many victories.  Life was often hard, but it had not stilled her heart.  She thought she had much yet to do.  She saw no final verdicts or terminal pronouncements she needed to abide by.  Her family, out of love, wanted to protect her from her disabilities and ended up trying to save her from herself.  And they never understood why she seems so much to want to be only protected from them.

“Even if things are hard and even if some things will never change it doesnt mean I cant. My circumstances may limit me but they dont define me.”

She has a family passionately in love and passionately at war. Her kids are adults and they dismiss her hopes as a symptom of her problems. She is “just mom.” They would run through a brick wall for her but prefer she be careful about trying to open doors. Hurt feelings abound on both sides. Both wonder how the other can be so ungrateful.

I think of all the times people that experience mental health diagnosis as the end of possibility. I wonder how many families have self destructed trying to help each other. We so easily lose each other behind the labels that define who we supposedly really are.

Like a boat with mast but no sail

I feel like a boat.
With masts.
But no sails.
In water deep and rolling.
With wind and rain.
Anchored above.
As if concrete and steel.
And immune to hope or wish or thought or effort.
Waiting for push or pull or escape from a moment that seems a forever tick in a clock frozen and sleeping.
Melody and song seem covered and quieted in molasses moments that seem deathly sweet.
I wait.
For dawn, for difference for evidence of new land ahead.
I tell myself there is movement even when I see or hear none.
No moment is alone from other moments and sails are often there and not seen.
The storm lies (they always do)
For they are only of the moment.
However fierce and loud.
And I hold tight to the faith of new seas.

The Seven Bi-polar Man

It seems like in light of the attention being given to the DSM that several of my past posts have had to do with diagnosis either directly or indirectly.  Apologies in advance for one more.  Hopefully the last one for a while.  But I wanted to tell you about the “seven bipolar man.”

When we first started our support group and were looking for speakers we were given the name of a doctor who we were told was the local expert on bipolar disorder (I later found out the reason everyone said that was because he told them he was.)  He was very nice and very willing to speak and apologized saying that a pharmaceutical company normally supplied food when he spoke but that this was too short of notice.  He told me he really liked speaking to groups like ours.

He was a great speaker, very engaging, very personal.  I dont remember much of what he said but I will remember our conversation afterwards forever.  He talked about the controversy in the explosion of bipolar disorder and he told me people had it all wrong.  People were arguing about whether or not bipolar 2 was really bipolar and if kids could have bipolar and where all the new bipolar people were coming.  “There are not 2 kinds of bipolar.  There are really 7.”    He thought borderline personality was a form of bipolar disorder.  He thought attention deficit was a form of bipolar disorder.  The shorter list was what he didnt think was a form of bipolar disorder.  He saw the look on my face and assured me he was serious.  He had some close friends on the DSM committee and they were promoting a concept he called the bipolar spectrum disorder.  He was sure they had enough votes to “discover” the new bipolars and told me in 2013 it was going to be one of the major changes in the DSM.

Well he didnt have the votes.  I dont even know if it was seriously talked about but somehow I believe it is a disease just waiting its day.  I still remember how amazed I was that day listening to this psychiatrist talk to me about the politics of discovering new psychiatric ailments.  He is still in practice and still widely regarded as the expert on bipolar in this town.  I guess he still is making sure everyone knows.

It sure does make me wonder about the diseases discovered this time and a little bit more than apprehensive about discoveries ahead.

On the mental illness buffet

I have a friend who told me he had 5 mental illnesses according to what his psychiatrist told him.  He told me he guessed he had “went to the mental illness buffet and ate too much.”

His psychiatrist really didnt either appreciate or understand his sense of humour, but I thought he had really hit on something.  Perhaps it shows a bit of the insanity of insanity.

I thought of questions I would have asked his psychiatrist.

• Is mental illness primarily a brain disorder?? (He would have said yes)
• If I have 5 mental health diagnoses does that mean I have 5  different brain disorders or do I have one disorder that shows itself 5 different ways??
• How do you know??
• If the symptoms for one disorder are similar to the symptoms of another how do you know what brain disorder is causing what??
• What brain disorders do I have??
• If you dont know how do you know I do??
• If you are deducing brain disorders based on observable behaviors is that not just a form of superstitious thinking??
• If I went to another psychiatrist how likely is it that he will say I have the same 5 disorders??  Another heart surgeon would say I have the same heart disease.
• If the other psychiatrist is likely to say something different (he is) who should I believe and why?
• Does the medication you are prescribing address the brain disorder you say is causing my problem??   If I have 5 different disorders do I need 5 different medications or does one address all of them??  If one addresses all of them are you still sure I have 5 disorders???

Probably some silly questions I know, but the point is serious.  Labels have consequences and the process whereby you label people has consequences.  When the way you make sense of things makes no sense it leads to much nonsense.  And believe me that has consequences.

“The Knots Prayer”

CAB

For the last few years I have been chairman of the Consumer Advisory Board (CAB) for the Tennessee Dept of Mental Health.  The CAB is the body designed to make sure that the voice of the people who use mental health services has a seat at the table as the department is making decisions that will affect them.

Yesterday with a great deal of regret and sadness I turned in my resignation.  My life right is full with very real crisis and the CAB is not part of me taking care of me.  It has been a great experience, one I will always treasure.

I want to publicly thank some people who have been helpful to me and so central towards building a strong voice for recovery.  They have done the real work and made a difference in this state:  Sheryl McCormick, Ed Rothstein, Lori Rash, Karen Brasher, Lawrence Wilson, Anthony Fox, Melanie Brander, Coy Lauer, Steve Brannon, Jennifer Jones and many, many others.  A special thanks to those from the department:  Lisa Ragan whose vision drove so much, Vik Moore a man of many talents, and Kathy Halley who was the main contact with me whose kindness and patience will be forever appreciated.

Thanks to all these folks and more who have honored me with their time, energy and friendship.  This is not an exhaustive list.   There are too many to name, but thanks to all and may good stuff await you.

Smoky Mountain day

Psychiatric branding

From a reader:

“Larry I think things go farther than you realize. I read the post about “Its about the money” and had some reactions.  Psychiatric labels dont really matter in some ways, but in some ways they are all that  matters.   I have been in psychiatric hospitals several times and I really dont see how my diagnosis has affected my treatment.  Everyone is treated the same.  It is all cookie cutter and bland.  It is repetition punctuated by boredom.  There is no treatment matched to needs.  Your diagnosis punches your ticket in the door but once inside it is the same show for everyone.

I recently left what I think would be called a good hospital.  They were a small unit that “served the needs of the chemically dependent, the mentally ill, and the elderly patients.  This combination sometimes creates unique challenge….”  Not really unique.  The program was group all day.  They had about 20-25 prepackaged groups that they just rotated around.  If you came back for a second or third time you knew the groups as well as the therapists.  The idea was not to fit the groups to you, but you to the groups.  It was to teach a set of generic skills that might be helpful to people in distress.  If you were elderly or infirm the program was for you to sit in your room by yourself and wait all day.  There was nothing for those that group didnt work for or who couldnt work group.    The reason they served everyone was financial.  Otherwise they couldnt keep enough patients to stay afloat.  So much was just smoke and mirrors.

I accidentally one day saw the front of another patients chart.  It had a note on it that said, “Dr.__, please change the diagnosis and make chemical dependency primary.”  It was signed by a clerk.  I, perhaps stupidly, later asked a staff member about it.  Even more stupidly they answered.  “It just means that the primary diagnosis has to be chemically dependent in order for the insurance to pay.”  I asked what if chemical dependence was not the primary problem.  What if that was not what the doctor in his psychiatric assessment saw??  The staff just shook his head and walked off.  I hadnt understood reality.

Later I thought about it and thought maybe I did understand.  The diagnosis didnt matter.  They treated everyone the same.  The diagnosis was more like the label in the back of your clothes.  It was the brand you were.  The brand you were  had to correspond to what your insurance company was willing to buy.  They might pay more or longer for some things, shorter or less for other things, and for some things not pay at all.  In the end the clerks know best.  But your brand really counted.”

 

It all makes me wonder.  I read an article the other day that said all the DSM stuff was irrelevant to working psychiatrists.  It really didnt affect what they did since basically what they tried to do was manage symptoms.  And then it really hit me.  Is psychiatry the only branch of medicine in which diagnosis of the problem is irrelevant??  And then it hit me even stronger.  If diagnostic concerns are one of the things that define medical care and if diagnosis is largely irrelevant to psychiatric care is psychiatry really medicine??  I dont know.  I am sure my psychiatrist friends would tell me it is a lot more complicated than that.  But I still wonder.

The fallacy of misplaced concreteness is still a fallacy

There is a lot of conversation now about the DSM and diagnosis.  Much of the criticism can be boiled down to a few points:  What you call someone is not what is most real about them.  Finding more things to call them does not make it any more real.  But even if it is not accurate or real it does matter what you call them.  Labels have consequences.  Dont tell yourself it is just words.  It aint.

Back in the 1920′s a philosopher named Alfred Lord North Whitehead came up with a notion he called “the fallacy of misplaced concreteness.”  He took up more than a few pages to describe what it means but basically his point is that abstractions, however useful, however harmful, however they are described are not really real things.  They are abstractions.  And while we cant do without abstractions the clearer we are that they are not the things they describe the better life will be.

I wrote kind of a poem called “diagnosis.”  I thought it was important enough to place on the sidebar of this blog.  This might be a good place to revisit it.

 

On diagnosis

You are not the things

You are called

No matter how frequently

you are called them,

Or who calls 

Or why they call.

You are not the things

you are like

regardless of how much

you are like them.

You are not

the things that measure you,

that place you

or limit you.

You are not

what you have,

how you look,

or how you feel.

You may be many things,

But no thing is all you are.

You are a gift

in a world needing gifts,

an opportunity,

a miracle,

in a world that often believes in neither.

You can care and be cared for,

Touch and be touched,

Laugh and cry,

Live and live for.

You can be alone  or be with,

be brave or be scared.

Nothing is closed,

but nothing is free.

Close not your eyes

And reach to be all you can be.

Alligators

Have you ever found yourself swimming with the alligators and wonder where the heck they came from??? 

Here is a guide to alligators:

1. They are real.  Above all else they are real.  Danger is part of life.  There things, people, events, situations in life that will hurt you.  And like their cousin the alligator you may not know until they are right upon you.  Not everything is an alligator.  But because danger is not everywhere it does not mean danger is no where.
2. Do not go where you know they live.  If you know a gator lives somewhere do you really need to check and see if they are home???  Do you really need to see if their teeth are as sharp as they were last time?? 
3. If you see them sitting there waiting on you dont come check them out.  The farther away you can see them the safer the next step is.
4. If someone tells you they are safe and he has swum with them before dont believe them.  He has lost arms or legs and is counting on you not to notice.
5. Despite what anyone tells you the water is not fine if an alligator awaits.
6. Catching an alligator asleep one time does not make you more likely to find him asleep the next time.  Eventually if you hang out with things that bite you will get bitten.
7. If you must get in the water know how to get out.
8. If you do get bitten dont be an easy meal.  Have a survival plan.
9. Learn from your experience.  There is no law that says you must be committed to dumb or foolish things.
10. Dont let danger be all you experience.  There is much in the water to treasure and be grateful for.
11. Dont blame the water.  There are alligators on dry land too.

Mountain light

When darkness seems impenetrable there is still light.  And beauty still.

Medicine’s big new battleground: does mental illness really exist?

http://m.guardiannews.com/society/2013/may/12/medicine-dsm5-row-does-mental-illness-exist