Grey Matters

When I wrote the blog about Major Hasan, the soldier who went on a rampage at Fort Hood I received a tremendous amount of response decrying my belief that the man might have a mental illness.  Most responders believed he was a “Muslim terrorist” and that mental illness had nothing to do with his act.

With yesterday’s accused “Pentagon Attacker,” Joseph Bedell, the link seems more clear cut. His family had struggled for years to get him into treatment.  But, as so often is the case unless he displayed an obvious threat to himself or others, they were limited in what they could do to help.  Even the law officer that stopped him for a moving violation in Texas could tell he needed to be in a hospital, but he wasn’t able to get him admitted. Mr Bedell was a threat to himself and others and no one paid attention.

There were so many red flags.  Like so many people in our country he was agitated with our government.  Like so many of us that are tired of the activities or in-activities of our legislature, he was frustrated and angry.  But, unlike most of us, he wasn’t able to contain his anger and acted out in the most savage way he could. 

As an advocate for people with mental illness, his tragic story reminds me once again how far we need to go when it comes to treating our fellow human beings that are suffering from brain disorders.  Inflammatory rhetoric and inexcusable callousness does not further growth as a species and can have a devastating effect on some of our most vulnerable.   Compassion and understanding have positive effects. Pushing those living with mental illness aside and pretending they don’t exist, that they are “terrorists,”   or that they are someone else’s problem has consquences.

As mentioned in a previous blog, the Diagnostic and Statistical Manual is in the process of being updated and now is the time to register your comments.

The Diagnostic and Statistical Manual (DSM) is used by psychiatrists and other mental health professionals to classify and diagnose mental disorders in children and adults. The DSM has historically had a very significant impact on the treatment of mental illness and on the payment of mental health treatment and related services. A committee created by the American Psychiatric Association (APA) has been working on revising the DSM to reflect current scientific understanding about mental disorders. Earlier this week, the APA posted the draft of the revised DSM, known as the DSM-5. The draft DSM-5 can be found at the website: http://www.dsm5.org/Pages/Default.aspx

For the next two months, the APA is seeking input from individuals, family members, clinicians and others about the proposed changes contained in the DSM-5. The deadline for submitting these comments is April 20, 2010. I will be providing you with more information, including NAMI’s reactions to the proposed changes, in the coming days and weeks. Meanwhile, I encourage you to visit the DSM-5 Web site, familiarize yourself and your members with the proposed changes and submit comments as appropriate. NAMI also wants to hear your reactions and comments. Post your feedback on the National Alliance on Mental Illness website at www.nami.org

NAMI wants to hear from you.

People living with mental illness face this question all the time.  “Should I tell my employer about my illness?”  Supposedly the Americans With Disabililty Act provides some protection, but…..I think it boils down to a personal decision. 

A friend of mine, Scott Whitley,  is living with Bi-Polar illness,  is in recovery and works as a Resource Specialist and Board member at NAMI of Southern Arizona and a tireless advocate for people living with mental illness.  He agreed to share the following story about his non-disclosure and subsequent full disclosure.  I thank Scott for being so honest about a difficult decision and hope it will provide some insight for employers as well as employees.

 In peer support groups it has frequently been discussed if Manic Depressive Illness should be disclosed in the work place.

Often it comes down to what is the American with Disabilities Act position.

I would like to approach it by what it has meant to me.

I had to live with the consequences since I did not disclose. Not just for me, but my work place.

I have a form of Manic Depression Illness known as Bipolar 1 Disorder. This is what I will discuss. This is where my experience lies.

It was February 1989 when I was first introduced to mania. I ended up dropping out of school, ending a relationship with a woman, alienating my family for two years and finally landing in jail, a place I never thought I would be.  

The depression was short; it only lasted about two weeks and then I bounced back. In the period of six weeks I had my first manic and depressive episode. They are connected with me. That is why they call it Manic Depressive Illness; they are both part of the illness.

The next step in this story was going to Mexico to work on a new crop project that I had been offered. This started a period in my life I call “Manic in Mexico.” It sounds like a Jimmy Buffet song- but it was no song- it was a life changing reality.

I was supposed to be an important part of the project.

I had been recently diagnosed and put on a low level of a mood stabilizer. I was told it would be a slow process to get to a therapeutic range and it was necessary to have blood draws. At first it was every two weeks, then once a month. It was a slow process, requiring a responsible attitude. Of course I did not listen. I was given a medication, and thought, as with antibiotics, I would be cured after seven to ten days. Isn’t this how it works with illness?  Only with this illness you are not infected with a bacterium that goes away. Manic Depressive Illness is part of you, your make up, your being.

That May I went to Mexico. I was briefly educated about the illness and that it was an event for life. It would not disappear and medication was needed to control the illness. I did not listen. I wanted this dream job in Mexico. I was cured. Was I not cured? This is where a five minute decision changed my life.

I went to Scottsdale to have dinner to discuss the project with one of the organizers and money people. I was psyched. (Excited, NOT psychotic yet!)

I had put behind my behavior of February. It had not been me.  Besides, I was on medication, I was cured. My behavior was a fluke.

After dinner we sat down to go over the final details. Then it happened! He knew the woman I was involved with when I had my first manic episode. He liked her and wondered why we had broken up.

I knew what had happened; over two hundred phone calls to her in a ten day period ending in a verbal manic rage at her 85 year old 4’ 10” Ukrainian mother; then getting arrested and put in jail for a night. This led to two weeks of not being able to get out of bed. 

I did not know if I should tell him about the illness. Would I lose the opportunity to work on the project? My mind began to race over the decision. What was the worst that could happen?  I reasoned out that I was cured. The work was important to me. What could happen?

The next day I left for Mexico. The racing thoughts had just begun. Over the next several months the symptoms of mania occurred; racing thoughts, grandiosity, insomnia, hyperactivity, black and white thinking, hyper verbosity,  endless energy, intense passion about the work, then euphoria and finally a psychotic break with a manic rage. I was not of sound mind! The project ended.

I have often wondered if I had gotten the job had I disclosed my illness.  Then the next logical point: if I had gotten the job and more education about the illness, would I have been likely to ask for help before the symptoms exploded into full blown mania?

This is what I believe of that situation in Mexico. When things were beginning to escalate into mania what if I had reached out for help, had the support of people around me and was willing to accept help?  It might not have lead to mania; I might not have destroyed the project and my path in life.

Maybe I would have lost the job if I had disclosed. I did anyway because my behavior.

My illness is part of my being, therefore part of my work and my relationships.  It affects my decision making when I am symptomatic, not only with mania but also depression.

This why I find support groups so valuable, to discuss these situations that are faced by those of us living with Manic Depressive Illness.

Do I really want to live hiding and hoping no one finds out, living with where to put medication bottles so friends don’t find them?  Also when your mood starts to escalate, to whom do you turn?

Maybe the work place is still not the place for this. How do we change the environment?  Do I hide, hoping that nothing goes wrong?

I know the Americans with Disabilities Act have the legal slant on this. However, being responsible is more than a law for me.

I live with an illness that can affect not only me, but the people and the work around me.

Yes I did suffer for my decision. Now I live with my illness. I am open.

I do not walk up to people and say “Hi, I have bipolar disorder.”  For myself there is a time and place for disclosure.

After living with the diagnosis of bipolar 1 illness for over twenty years, I have learned that behaviors are symptoms and people judge you by your behaviors. I have learned through support, education and the right medication living with the illness is possible.

In my next work experience I handled things differently. This time I disclosed my Bipolar Illness. I felt it was necessary to do so because I would be going to Kenya on a new crop project as a volunteer. I knew I would need support due to the importance of the project. I learned from my previous experience that positive stimulus could throw me into mania. I needed feedback from the general manager and the colleague who accompanied me to Kenya;  if I was to go hypo-manic (just below mania), their feedback could  help me to prevent the mania from setting in.

At the end of the year commitment of volunteering my colleague and I were offered a contract to stay on in a paid position. Unfortunately, the funds for the project ended and I came back home. Nevertheless, I walked away with a valuable lesson. For me, I believe disclosure is necessary when I am seeking a position of responsibility. I am not saying this is right for everybody. What I am saying is take time to discuss it and think about it. This can be a life changing decision. It has been for me.

Part of the stigma that surrounds mental illness is caused by nothing less than ignorance.  Most people aren’t educated about mental illness because they think it will never happen to them.  Slowly, but surely, this is changing as people realize that one in four families are effected.  Every time I give a presentation to a group of people, from a few to hundreds, I always ask the question, “how many of you in this room know someone who has a mental illness?”  If I had to guess, I would say that it’s almost 90% every time.  I also find during the discussions, that once the barrier is lifted and people feel comfortable talking about it stories that have long been kept private because of stigma are articulated in compelling and often cathartic ways.

One common confusion is that people believe that a psychopath and a person experiencing psychotic symtoms like those suffering from schizophrenia, are one and the same. Nothing could be further from the truth.  Schizophenia is a thought disorder that can cause delusions (psychosis) and psychopathy or sociopathy consists of a certain set of personality traits and behaviors.  Superficially charming, psychopaths tend to make a good first impression on others and often strike observers as remarkably normal. Yet they are self-centered, dishonest and undependable, and at times they engage in irresponsible behavior for no apparent reason other than the sheer fun of it. Largely devoid of guilt, empathy and love, they have casual and callous interpersonal and romantic relationships. Psychopaths routinely offer excuses for their reckless and often outrageous actions, placing blame on others instead. They rarely learn from their mistakes or benefit from negative feedback, and they have difficulty inhibiting their impulses.

Psychotic disorders are characterized by distortions of reality and disturbances of thought and language and can cause withdrawal from social contact.  People with schizophrenia, bi-polar or even acute depression can experience psychosis.  The good thing is, that these mental illnesses are treatable and most can and do achieve mental health recovery.

Every year one in four families are affected by mental illness yet budget cuts and stigma continue to keep people away from adequate treatment.  Every year the National Alliance on Mental Illness (NAMI) of Southern Arizona serves thousands of local residents through advocacy, support and educational programs.  All free of charge.

NAMI of Southern Arizona is just one of the many non-profits in our community that serve people with  mental illness totally free of charge.  Your donation to the organization is tax deductible and a great way to show you care in this season of giving. Please visit the website at www.namisa.org where you can easily donate on-line.

Other ways to show you care about the people in your life:  From the “World of Psychology” by John Grohol, PSYD

1. Do It, Don’t Say It.

You know that old common wisdom, “Actions speak louder than words”? Well, it’s true. While you can apologize for not doing something until you’re blue in the face, you’ll gain so much more appreciation by another in your life by simply doing it in the first place. Yes, it means you have to work harder to keep on top of things to begin with, even with simple things like taking out the trash or running that errand you said you would. But the reward is that your loved one will know you care because you just did it without being asked or reminded to do so.

2. Refuse to Argue and Pick Your Battles.

Arguments are a constant source of relationship strife, even amongst family members or friends. You may say, “How can I just stop arguing?” Easy, because engaging in a conversation with another person is a choice we make (whether we always do so consciously or not). Make a conscious effort to note when you’re entering into an argument, and then just stop. Remember, not every argument is worth engaging in — so don’t feel like you have to get into an argument just because someone else is asking for one. “Sorry, I can’t talk about this right now, let’s talk more about this later…” or “You’re right, I’m wrong, I’m sorry” will put a sudden halt to the argument. Which leads us to…

3. Apologize Often, Even If You’re Not Wrong.

Why should you apologize even if you’re not “wrong?” Well, it depends on your point of view. Is being “right” more important to you than your loved one’s feelings? Is being “right” something you’ll be proud of when you’re on your deathbed — “Well, hell, I may have caused her a world of hurt, but at least she knew who was right!” Apologies are simple, free, and entirely within your world of control. Handing them out just as freely and easily will, in the long-run, make you feel better and also make your loved ones feel better. It shows you care more about them rather than winning any particular (all-too-often, silly) argument. (As with all things, when taken to an extreme, this is also not particularly healthy behavior, but do know when to pick your battles.)

4. Do Something Unexpected.

Most people love a surprise, especially when that surprise is something that helps them or makes their life a little bit easier, if just for a minute. It could be as simple as a card to show appreciation “Just because,” or offering to watch the kids one night when it wasn’t your turn. It could be saying, “Hey, I’ll cook dinner tonight” or “Hey, I’ll take out the trash,” and then just doing it. Even simple actions can speak volumes, especially if the other person has had an especially difficult day. Imagine if it were your night to cook but you’ve had an especially difficult, stressful day. Your significant other knows this, and offers to cook instead. It’s a great expression of caring, even when it may seem too obvious or simple.

5. Sharing is Caring.

Sound trite? You bet it does, but guess what, it’s also true. It’s so much easier to eat the last cookie, or to get a glass of water just for yourself. But it shows you care when you offer someone else the last cookie or ask the other person if there’s anything you can get them while you’re up. Simple acts of kindness are the ones we so easily overlook in everyday life. Yet they speak volumes to others in our lives.

6. Wake Every Morning with An Appreciation for The Other Person.

Being grateful for the people and things in our lives is one of the most simple ways to achieve a sense of daily happiness. You don’t have to engage in huge displays of love or affection. Simple actions, like saying, “I love you” or packing someone’s favorite lunch may be all that’s needed. Often time, living with someone day in and day out can breed a certain familiarity (or, as the old saying goes, “contempt”). Keep that in mind, acting in a manner consistent with someone who loves another, not someone who is keeping silent score. Even if your partner never knows it, it’s a way of showing you care that can be just as important as any outward, direct display.

* * *

Showing you care to those in your life on a regular basis is more challenging than it sounds. The people we hold closest and dearest to us are often the ones we expend the least amount of effort in displays of caring and affection. Yet, most people appreciate and need the occasional display of caring.

It’s not hard, but it does take a conscious effort on our parts, and one that we may need to remember to do at least once a week, if not every day.

Capital Punishment 2007 stats

Lately there have been stories in the news about people that were given the death penalty(capital punishment) and executed only to find out later through  modern DNA testing that the wrong person was killed.  That in and of itself is enough to give pause before taking some one’s life for a crime, but what about when the person is seriously mentally ill and symptomatic when a crime is committed?

 Amnesty International believes that “The death penalty is the ultimate denial of human rights. It is the premeditated and cold-blooded killing of a human being by the state in the name of justice. It violates the right to life…It is the ultimate cruel, inhuman and degrading punishment. There can never be any justification for torture or for cruel treatment.”

At the National Alliance on Mental Illness (NAMI) annual convention in San Francisco last summer  families of murder victims  joined with families of persons with mental illness who have been executed to speak out against the death penalty.

Double Tragedies, a report released at the convention, calls the death penalty “inappropriate and unwarranted” for people with severe mental disorders and “a distraction from problems within the mental health system that contributed or even directly lead to tragic violence.”

The report calls for treatment and prevention, not execution. It is available online at www.nami.org/doubletragedies.

A  joint project of NAMI and Murder Victims’ Families for Human Rights (MVFHR), the report  is based on extensive interviews with 21 family members from 10 states, including  Texas which has the highest rate of capital punishment in the United States.

Most people with mental illness are not violent, many preferring to isolate and have little social contact. When violent tragedies occur it’s usually because the person has fallen through the cracks of a broken mental health care system.  Tragedies are compounded when all the families involved on all sides suffer.

Double Tragedies identifies an “intersection” of family concerns and makes four basic recommendations:

• Ban the death penalty for people with severe mental illnesses.
• Reform the mental health care system to focus on treatment.
• Recognize the needs of families of murder victims through rights to information and participation in criminal or mental health proceedings.
• Families of executed persons also should be recognized as victims and given the assistance due to any victims of traumatic loss.

Since 1976 when the Supreme Court  found capital punishment to be Constitutional, through June 3, 2009, 1,167 people have been executed in the U.S.

Hundreds of people with mental illness have been put to death in the United States and hundreds more are awaiting execution.

Discrimination against people with mental illness is all too prevalent, but what does someone do when someone in your family is being stigmatized by their own family members? 

A member of the family, we’ll call him the Father, was diagnosed with schizophrenia approximately fifteen years ago, but it wasn’t until this week that his sister was given that information.  They live across the country from each other and and don’t see each other often, but the sister has always know that her brother was “quirky.”  She knew he was brilliant and that he had scored very high on a IQ test while in high school and always considered him a genius.  Over the last several years she often wondered if her brother had a mental illness diagnosis, but no one else in the family thought it possible.  That is, no one besides her sister-in-law who finally shared the information after living with him for over twenty years and raising a family. 

The sister, who believes that mental illness should not be kept in the closet and needs to be spoken about feels frustrated and saddened by her brother’s family’s inability to share openly an illness that needs to be discussed.  It is the first step in reducing stigma.

All that can be done  is to encourage the family to be open.  This is an issue that they must come to grips with on their own, but here are some suggestions (some from the www.nami.org website) to anyone interested in reducing mental illness stigma. 

Use of Language is Most Important

•  Protest usage of single words like “crazy” “psycho” “wacko” or “loony” unless they refer directly to individuals struggling with mental illnesses or to the illness itself.
•  ”Schizophrenic” to describe a split decision made by Congress or any organization has become part of our cultural language. However, its misuse is being heard and corrected by many in the public arena.
•  Protest calling a person a “schizophrenic”: NAMI policy calls for PEOPLE FIRST: people, persons, individuals with a mental illness, schizophrenia, bipolar, clinical depression, OCD, panic disorder.

Above all else, get educated and know that mental illness, like any other illness is a biological disorder;  it can be successfully treated and recovery is more than possible, it’s probable.  Ignorance has caused people to abandon their family members and encouraged the person with the diagnosis to isolate themselves. 

Just like a person living with cancer or diabetes, a person with mental illness needs support and acceptance from their family and friends. 

There is a genetic predisposition, so everyone in the family needs to know what the symptoms and “red flags” are.  Sometimes is takes years, even decades before a person is diagnosed.  It is proven than the earlier a person receives treatment, the better the outcome.

Encourage our legislators to treat mental illnesses with parity so that insurance coverage is equal for mental illnesses with physical illnesses.

Bottom line is we need to accept people for who they are, with or without any illness and be there to support and encourage them as equal human beings.

Another person has joined the campaign to end discrimination against people with mental illness.  Glenn Close, whose sister has bi-polar, is speaking out about removing stigma and creating hope for people living with these illnesses.

Close has appeared on numerous television talk shows with her sister, Jessie, who lives in Montana.  Jessie’s son is also living with schizophrenia and they credit NAMI with giving them the strength to speak out.

They star in a new public service announcement that is airing on several major market television stations.  Ron Howard, who made the movie “A Beautiful Mind”, directed the PSA “film shoot” in New York’s Grand Central Station.  The campaign has received broad support from the mental health community.

Earlier this year, Close helped lead Maine’s NAMI Walks near her home. The campaign Web site, www.bringChange2Mind.com  has had over 80,000 visitors to date and its Facebook community has over 3,000 friends.

see the video here:  “http://blip.tv/play/hMYXgafJfwI“

Halloween Horrors from the NAMI Website

It’s trick or treat time again. We don’t mind ghosts and goblins, but when “haunted house” attractions become “insane asylums,” featuring “mental patients” as murderous ghouls, we protest.

Violent stereotypes are inaccurate and offensive and the U.S. Surgeon General has determined that stigma is a major barrier to people getting help when they need it. Help send the message!

Local Attractions
Here’s an example. NAMI New Jersey is fighting an “Asylum of Terror” sponsored by a local museum and supported by a local Walmart and Dunkin’ Donuts, to name a few. Please e-mail the museum to let them know that perpetuating stigma towards persons with a mental illness is a national — as well as local — concern.

In Your Own Communities:
If offensive Halloween attractions or products appear, contact sponsors, advertisers or sellers personally. Educate them. Ask them to remove offensive parts of any attraction, advertisements or merchandise that mock mental illness.
If dialogue fails, alert NAMI members, family and friends to phone, send letters or e-mail the sponsors or stores.
Contact local newspaper editors and television news directors. Educate them about stigma and your concerns. Make the protest a “news event” and a “teaching moment.” Offer consumers and family members for personal interviews.

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Am I being sensitive, but is anyone tired of the pink ribbon campaign? I just returned from a conference in North Carolina and even the flight attendants were wearing pink t-shirts, scarves and/or dresses. It seems like the marketing department for breast cancer research has become overly obsessed with getting their message out. I wonder just how much of the money they raise goes to pay their salaries?

Perhaps I’m just jealous, and I know this blog is probably going to cause many people to be angry with me and I apologize for that. It’s not that I don’t believe in breast cancer awareness (my grandmother had to have a double mastectomy), but as an advocate for people with mental illness I wish there was more awareness and less stigma about mentall illnesses that effect 25% of our population in any given year and causes more disability that any other illness. Yet, with proper treatment, 70-80% of people living with mental illness do recover! Still, no one knows about it! Even the National Mental Illness Awareness Week the first part of October was totally overshawdowed by “pink ribbons.”

The National Alliance on Mental Illness has called for an increase in research spending for the National Institutes for Mental Health.  Below is the statement from their website.
Please take the time to register your thoughts.

NAMI Calls for Increase in NIH Funding
NAMI is joining advocates from across the nation in asking President Obama to make medical research for improving health care a priority and support robust funding for the National Institutes of Health (NIH) and the National Institute of Mental Health (NIMH).
NAMI and other illness and patient advocacy groups are rallying advocates to contact the White House this week in support of significant annual increases for NIH.
“NAMI is pleased to join other disease advocacy organizations in support of the ‘Research Means Hope’ movement to ensure that the president’s FY 2011 budget meets the goal of making biomedical research funding a national priority,” says Michael J. Fitzpatrick, NAMI Executive Director. “Investment in medical research is the source of hope for people living with serious mental illness.”
“Direct and indirect costs of mental illness impact the federal budget overall and state and local communities nationwide, including a substantial and growing burden imposed on “default” systems such as emergency rooms, homeless shelters, police, jails and prisons.”
“Adequate investment in research on schizophrenia, bipolar disorder, major depression and other disorders is essential for our nation to address these human and financial costs. The National Institute of Mental Health (NIMH) has received more than $368 million in ARRA funding to support meritorious grants and invest in new ‘challenge’ grants and ‘grand opportunity’ grants.”
President Obama needs to continue this investment in his FY 2011 budget proposal.”
How you can help
Now is a particularly important time for President Obama to hear from advocates because he is working with his administration to determine the FY 2011 budget priorities.
• Take Action: Send a message to President Obama on NIH funding.
• Learn more: Details on Proposed Mental Illness Research Funding.

You can access direct links for taking action on the blogroll lists on this site.