It's Not Stigma -- It's Prejudice and Internalized Oppression

Stigma sticks to the persons stigmatized.  And sure enough, we are stuck.  Every time we repeat the word, we reinforce it.

Here is an idea.  It's not stigma.  It is prejudice and internalized oppression.

We gotta do something new, people.  We're dying out here.

Treatment For Mental Illness -- The Streets Or Jail

Ever since John Kennedy promised us more humane, community-based treatment for mental illness, we have been living on the streets.  Somebody with serious mental illness is four times more likely to be homeless than somebody without.

Or in jail.  On any given day, there are roughly 283,000 persons with severe mental illnesses incarcerated in federal and state jails and prisons.  In contrast, there are approximately 70,000 persons with severe mental illnesses in public psychiatric hospitals, and 30 percent of them are forensic patients.  Los Angeles and Cook County jails are the largest inpatient mental health facilities in the country.

No Respect=No Money=No Help

Does anybody out there live in a state where funding for mental health services is not being slashed?  Wasn't being slashed even before the last elections?

Now that we are talking money, how is this for a reality check on what we are worth -- from John McManamy's blog Knowledge Is Necessity:

In 2009, the NIH allocated $3.19 billion for HIV/AIDS research.  By contrast, research for depression (including bipolar) was a mere $402 million.

Million, not billion.  These are ratios that have held fairly steady over the years.  Approximately 1.5 million individuals in the US are affected by HIV or AIDS.  About 19 million in the US in any given year deal with depression or bipolar.  That translates to the NIH spending $2,013 per patient for HIV/AIDS research vs a paltry $21 per patient for depression and bipolar.  Putting it another way, for every dollar the NIH invests in an HIV/AIDS patient, depression and bipolar patients get one penny. [emphasis added]

Kinda puts things in perspective.

Funding By Death

But AIDS is fatal.  What about spending per death?

The number of deaths of persons with an AIDS diagnosis has stabilized in recent years at around 17-18,000 per year.  (Deaths of persons with an AIDS diagnosis may be due to any cause).  Since the beginning of the epidemic, an estimated 597,499 people with AIDS have died in the U.S.  Again, that does not mean they died of AIDS.  The figure includes heart attacks, cancer, accidents, suicide, etc.

In contrast, the Center for Disease Control reports that 34,598 people died by suicide in 2007.  We are pushing 900,000 deaths by suicide in the same period as the 600,000 people with AIDS who died for whatever reason.

But people with AIDS are now living longer.  Today, for every death of a person who has AIDS, two people die by suicide.  Far from stabilizing, the suicide rate has been rising since 1995.  [Side note: so much for that claim that increased antidepressant use caused the rate to go down.  There are more of us on them now than ever, and more of us dying anyhow.]

Depression is not the cause of suicide in all cases.  Research indicates that 90% of those who die by suicide have a mental illness.  That 70% have a mood disorder is a low ball estimate.  But that would yield 24,218 deaths by suicide among persons with mood disorders.

So the NIH spends $for 187,647/year for every death of a person with AIDS and $16,599/year for every death of a person with a mood disorder.

Oh, it's not so bad after all.  If we look at death rates, the disparity is down to $11 for somebody who has AIDS and dies by any cause to $1 for somebody who dies from depression.


Feelin' all warm and gooey inside now. 

No Political Price To Pay

Here is the politics at work.

The Ryan White Act was enacted in 1990 and named after a twelve-year-old who was kicked out of school because he had HIV/AIDS.  The act provides funding of last resort for poor people with HIV/AIDS and technical assistance to state and local organizations dealing with HIV/AIDS.  This is on top of the NIH research funding.

The money is not much, just over $2,000,000.  But it has held its own in the last decade, with modest increases every year until 2010.  Up for expiration in 2009, it was renewed by unanimous vote in the Senate and 408 aye/9 nay/15 abstaining in the House.

Now I am totally in favor of the Ryan White Act and the amount is stingy.  But I ask you to consider, do people with mental illness have anything like the Ryan White Act?  And can you imagine a legislator who thinks there will be any political price to pay for the cuts he/she is voting right now to services for people with mental illness, or for teaching laws enforcement how to handle mental health emergencies?

We could run the numbers for other diseases.  Breast cancer would reveal similar results.  Please, please understand me.  We are not on different sides here.  The AIDS example is especially valuable because we can draw lessons from what AIDS activists have accomplished. 

Stigma Busting Is A Bust

The problem is that people don't think of mental illness as real illness, right?  The solution is more education about the biological basis for mental illness, right?

No, not so much.  Researchers at Indiana University and Columbia University examined changes in understanding and attitudes in the US between 1996 and 2006.  Education has indeed increased understanding that mental illness is a biological condition.  54% of people knew that about depression in 1996, 67% in 2006.  Let's give the pharmaceutical companies some credit for their share, probably the lion's share of that change.

On the other hand, do they want to work with, socialize with, marry or live next door to us?  Nope.  Those numbers did not budge in the same time frame.  More telling for the task of designing stigma-busting strategies, there is no difference in attitudes between those who know that mental illness is biological, and those who do not.

In fact, those who understand the neurobiological basis for depression are more likely than those who do not to think that we pose a danger to them.

I'll kill 'em.  I swear, I'll kill 'em.  Just as soon as I can get out of bed.

What we are doing against stigma -- it's not working, folks.

How come?

Evidence-Based Stigma Busting

A study from the University of Kent in Cambridge, UK uncovered one flaw in typical stigma-busting efforts.  To bottom line it, how the listener responds depends on who the speaker is.

When allies (such as doctors or family members) make positive statements about people with mental illness, they are less credible than when people who have a mental illness speak for ourselves.  They is a word that doesn't cut it in stigma-busting, regardless of intention or attempt at sensitivity.  The authors cite previous research regarding other stigmatized groups showing that positive statements about them can be perceived as patronizing. 

This Is Good News

1. We were never worth much and now are worth less.

No, I mean it.  This is good news.  As my therapist used to say, The facts are friendly.  These are the facts, and they will be our ammunition.

2. We can do better.  In fact, the bar is set pretty low.

3. We have others, even among us, who have fought prior battles and can point the way.

Next week we take advocacy to the next level.


 

photo from La Brea Tar Pits by 3scandal0 and in the public domain

photo of homeless vet by Matthew Woitunski and used under the Creative Commons Attribution 3.0 Unported license

image of red ribbon in public domain

photo of coffins of members of the 101st. Airborne in the public domain

photo of chocolate molten cake by rore and used under the Creative CommonsAttribution-Share Alike 2.0 Generic license

photo of Ryan White taken by Wildhartlivie and used under the GNU Free Documentation License
flair by facebook

photo of Thomas Insel, director of NIMH in public domain

More on Sleep and Mental Illness

Last week's post on postpartum depression and sleep led me to a ring of articles about the link between sleep and mood.  So here we go again -- I have stumbled on another series!

My opening shot is piece my son and I used to watch from a Sesame Street bedtime video.  If it inspires you to go take a nap, that's fine by me.  You can read this post later.



Only, one line isn't correct.  It really doesn't matter, don't you know it's so.  'Cuz you sleep in so very many ways.

Sleep Matters

It does matter.  That guy yawning over his book might have pulled an all-nighter.  If he does that often, or stays up late, or changes shifts, he might be sleep-deprived.  Which puts him at risk for depression and suicidal thoughts.

Really.

Not to mention that goose egg.

What Is Suicidality

The studies I will be citing refer to suicidality.  So let's start by defining that term.  Actually, the word is used loosely, refering to a range of behaviors, in some places as the intent or attempt to kill oneself, in other places as anything from occasional thoughts to attempts.  Any of which is unpleasant, much of which is terrifying.

Suicidality And Depression

Doctors used to think that only people who were depressed committed suicide.  If somebody with schizophrenia committed suicide, they concluded that the diagnosis had been in error, because people with schizophrenia don't commit suicide.  So the theory went.  Notwithstanding what you have been taught about people who call themselves scientists, even in science it is easier to change your facts than to change your mind.

The general public still tends to accept that idea, suicide=depression.  When somebody they know commits suicide, the assumption is that they missed the signs of depression.

The vast majority of those who commit suicide are depressed.  However, not necessarily so.  People who have other mental disorders, or are in chronic pain, or have been diagnosed with a terminal illness, or have suffered a failure or humiliation, or just too many things and finally one thing too many are all at risk.  As David Conroy explains, Suicide is not chosen; it happens when pain exceeds resources for coping with pain.  Whatever the pain. 

Suicidality As The Tip Of The Iceberg

The Diagnostic and Statistical Manual of Mental Disorders (DSM -- psychiatry's bible) lists suicidal thoughts and behavior as just one symptom in their Chinese menu approach to depression -- one from column A, five from columns A and B.  You don't have to be suicidal to get the diagnosis.  But it is the symptom that really gets their attention.

If you have suicidal thoughts or behavior, then something is going on.  The odds are depression, but at least something.  And obviously, it's not fun.  So it is worth addressing, before it sinks your ship.


Sleep Disturbances And Suicidality

So here is a study that discovered, whatever else is going on in your life -- insomnia more than doubles your risk of suicidal thoughts, planning, action.

It doesn't matter whether you have depression, anxiety disorder or other mood disorders, or chronic medical conditions such as stroke, heart disease, lung disease and cancer.  It doesn't matter whether or not you are abusing drugs or alcohol.  Age, gender, and marital and financial status don't matter.  All of these are risk factors in themselves.  But whatever risk factors you may or may not have, insomnia more than doubles your risk of suicidal thoughts, planning and/or action.

Insomnia comes in three flavors in the medical world: trouble falling asleep, waking in the middle of the night, and waking too early in the morning.  The last has the greatest risk.

Irregular Bedtime And Suicidalality

There are other studies that examine particular applications of the poor sleep/suicidality connection.  Here is one that examines what happens to young adults when they don't go to bed at the same time every night.

The Florida State University Laboratory for the Study of the Psychology and Neurobiology of Mood Disorders, Suicide, and Related Conditions discovered that actively suicidal undergraduates got an average of 6.3 hours of sleep a night -- way not enough sleep.  This we could anticipate.

Then they examined another factor, how much their bedtimes varied -- an average 2.8 hours.  For example, they might go to bed some nights at midnight, other nights at 3 AM.  So they sorted subjects by the second factor, how much bedtime varied.  Regardless of the severity of an individual's depression, the more variable the bedtime, the more suicidal the student became over the course of three weeks.

Get that?  All by itself, how much bedtime varied, all by itself, predicted increasing suicidality.

Varied bedtime also predicted the intensity of mood swings.  Which is significant, because suicide is associated with mania as well as with depression.  Both are indicators of poor cognitive function and poor impulse control.

Not to mention a bad report card.

Adolescent Bedtimes And Suicidality

So here is one more, this one on teenagers.  (Teen do not have the highest suicide rates.  But they do seem to get the most press and the most research dollars.)

James Gangwisch, PhD, of Columbia University studied the sleep habits of 15,659 teens.  He reports that teens whose parents enforced a midnight bedtime were 24% more likely to have depression and 20% more likely to have suicidal thoughts than teens whose parents enforced a 10 PM bedtime.

The 10 o'clockers got an average of eight hours and ten minutes of sleep at night, compared to seven hours and thirty minutes for the midnight crowd.  Both were short of the nine hours that teenagers need, which would account for the general crankiness of most teenagers you know or are.

Oh, and that Nobody else's parents make them... argument?  More than half of parents enforce the 10 PM bedtime.  And 70% of teens comply.

I didn't find a study on the relationship of sleep and report cards.  But some scientists surmise from this and other studies that sleep deprivation may be the real reason for the United States' slip in global competitiveness.

The Good News About Sleep Deprivation and Suicidality

The good new is coming next -- implications for treatment of mood disorders and other causes of suicidal thoughts and behavior.

Now get off the computer and go to bed.

photo of scales from Deutsche Fotothek of the Saxon State Library

 photo of Chinese menu by Hoicelatina, permission to copy under the terms of the GNU Free Documentation License

photomontage of iceberg created by Uwe Kils (iceberg) and User:Wiska Bodo (sky), permission to copy under the terms of the GNU Free Documentation License

flair from facebook 

NAMI Walks -- We All Win

This is my second year for the NAMI Walk Johnson County, Iowa.  It's how people across the United States raise money for the National Alliance on Mental Illness, an organization whose mission is support, education and advocacy with and on behalf of people with mental illness and their families.

National Alliance On Mental Illness

I became passionate about NAMI when I learned about its origins.  Once upon a time, not so long ago, the holy writ on schizophrenia was that it was caused by overprotective mothers and disinterested fathers.  Wow.  In 1979, a bunch of these mothers started to push back.  They organized and demanded better research, better treatments, better treatment.  Would there ever be any progress in the world if it weren't for uppity women?  A new documentary, When Medicine Got It Wrong tells the story, coming soon to a PBS station near you.

NAMI has grown into a national program, built on local chapters.  It fights stigma.  It advocates for funding of services, research and rights.  It provides information about mental illnesses and medications.  It offers a variety of educational programs and services.

Peer To Peer

Prozac Monologue followers read with some regularity what I have learned from NAMI's Peer to Peer program.  In Peer to Peer, those who have a mental illness and are in recovery help others learn about recovery, living to the fullest while managing a mental illness.  I drove (my wife drove -- my meds won't let me drive anymore) 120 miles round trip every week for nine Iowa winter nights so that I could attend this program.  It was worth every mile.

Make A Difference

So here's the deal.  Every year NAMI raises money through local Walks.  My local chapter will walk on May 8th, rain or shine.  Last year was my maiden voyage into NAMIWalks.  I went with some trepidation, wondering just how bleak and weird a walk for mental illness could be.  Instead, I discovered a registration process that reminded me of summer camp, belly dancers leading the warm up, pep talks from the Hawkeye football team, a balloon arch, kids, dogs, food, t-shirts and more t-shirts, displays that kept falling over in the breeze, and chalk drawings along the trail made by the Girl Scouts.  It was a party!

I did not do a shabby job raising funds my first time out.  I knew I would do well, because I know my friends.  This year I decided to co-chair a team called, wouldn't you know, Team Prozac Monologues!  And right there, on the name, is where you can go to support my team.  Giving online is safe, easy, fast and tax deductible.

Team Prozac Monologues is about halfway to our goal so far.  Any amount you can give is important.

And as Hoops and Yoyo say,