Brave souls change hearts and minds!

cast photo

Photo: “This is My Brave” cast in Wheeling, West Virginia 

There’s a special feeling when we can be a part of something far bigger than we could ever accomplish alone.  This is my overwhelming feeling of having participated in Youth Services System and NAMI Greater Wheeling’s “This is My Brave Show,” which was held last night at the historic Capitol Theatre in Wheeling.

Audience photo

Photo:  The Experience Church Worship Team & Audience

If you aren’t familiar with “This is My Brave” let me shed some light on it for you.  It’s a national non-profit organization co-founded by the amazing Jennifer Marshall.  The purpose of the show is to allow those who live with mental health conditions (mental illness & substance use disorders) to share their stories through creative expression-poetry, original music, essay.  The intent is to impact the stigma of mental illness through story telling.

The sixteen cast members in our show inspired the audience and made a lasting impression on all those who attended.  Those who shared struggle with and persevere daily through challenges related to depression, anxiety, panic attacks, schizophrenia, bipolar disorder, binge eating disorder, suicide attempts and alcoholism.  Our show had an added bonus with the Experience Church Worship Team (aka-the band), kicking off the show with their inspiring and impactful musical talents.

The audience feedback has been nothing but positive.

Many people have said the IQ on that stage was beyond impressive.  Translation – people with mental illness can be smart.  Multiple people said, “it was fascinating to see the broad range of socio-economic levels and diversity of those impacted by mental illness.  Translation – mental illness does not discriminate.   One gentleman said, “I’m not affected by mental illness and I never realized what people go through.  This show helped me understand what others deal with.  I’m so grateful to be here tonight.”

And…the overwhelming comment by numerous people, “This show is inspiring.”

This morning I received this amazing quote from one of our cast members, Mr. Bill Hogan.  Bill writes,

“I have been involved in a bunch of stuff in my almost 90 years but never have I been so “electrified” by a group or an event as I was last night.  I love the word mystery and last night the wonder of it all, that unidentifiable power that charged the people on the stage as a group and as individuals was wonderful and gave everyone in that theater, on stage and off , a sense of joyful peace.  Everything was lined up the way it is supposed to be.
I am thinking of a quote  by W.B. Yeats  “ Go forth teller of tales. And seize whatever prey your heart desires.  Have no fear. Everything exists.  And everything is
True. And the earth is but dust under our feet.”  I am truly blessed to have been fortunate enough to have been part of a great happening.”

And that my friends sums up my feelings of being a part of something greater than myself.  Being part of a movement to shed light on mental illness, one person and one story at a time.  As Jennifer Marshall says, “Storytelling saves lives!”  Indeed it does.

Jennifer Marshall and Cast Photo:  Jennifer Marshall speaking to the cast of “This is My Brave” Wheeling, West Virginia

It’s not sexy to be a mental health advocate

BeVocal_Logo

October is breast cancer awareness month.  I didn’t know that until eight days into October.  My realization started when I went to the local grocery store and every other cashier light (you know the one that tells you when their open) was pink.  And they were asking for donations at the register for breast cancer research dollars.  Still didn’t realize it, because people ask for money for everything now.

Then, I went shopping.  Pink shirts for sale everywhere.  I was so impressed.  Everyone, unless of course you’ve been living under a rock, knows pink is the color for breast cancer.  It’s a highly successful awareness campaign that started in full force over twenty years ago.  Heck, even the NFL is “pinked out” in October.  As a mental health advocate I dream about the day when everyone knows mental health awareness is green and guys like Brandon Marshall (click here for Brandon’s mental health advocacy organization) don’t get fined $10,000 dollars by the NFL for wearing green cleats.

But when something is successful it warrants looking at their model and learning from all the good things breast cancer awareness advocacy organizations have done.  In fact, it all peaked my interest in finding out just how much money is spent annually on breast cancer research.

The answer-cloudy.  Mmmm….what do I mean by that?

Well, turns out that breast cancer awareness and research are lumped into one big estimated sum of $6 billion a year.  Of course there are critics who think all money should be research money.  But you don’t get research donations without awareness.

Why is this important to mental health advocacy?  Because the National Institute of Mental Health has an annual budget of only $1.5 billion.  The National Institute of Mental Health funds research for mental illness and neurological conditions (brain illnesses), like bipolar disorder, schizophrenia, dementia, depression, etc.  All of these illnesses have a fraction of money spent on research.

I compared the annual budget of the Susan G. Komen Foundation, a breast cancer advocacy organization based in Texas, (well known for the trademarked tagline “Race for the Cure”) to that of the National Alliance on Mental Illness, the largest mental health advocacy organization in the country.  I found the Komen foundation listed as #54 on the Forbes list of U.S. most wealthy charities with $250 million in annual revenue in 2016.  That’s for one year folks.  On the other hand, NAMI based in Arlington, VA has a little over $10 million in revenue.

In all fairness, NAMI has affiliaties in all 50 states who also have revenue, but I doubt even including all of them would break a $50 million in total revenue.

What’s my point?

How are we going to make sizable contributions as mental health advocates when the largest organization of advocacy only nets $10 million a year?  So many diseases to lobby for research on-so few dollars.  So many issues to battle, so few people to do the work.

And then there’s this…

#1)  STIGMA. It’s not cool to be a mental health advocate.

#2)  STIGMA. It’s not sexy to go out and raise money for people who have a mental illness.

#3) STIGMA. These illnesses are misunderstood.  They are often not looked at as an illness.

#4) STIGMA.  People are ashamed to come out and say they are living with a mental illness.

#5)  STIGMA. Policy makers don’t understand it, unless it effects them.

#6) STIGMA.  Family members don’t want people to know their loved ones live with a mental illness.

And…

I could go on and on.  You get the point.  We have limited resources for a very complex problem that most people don’t understand and many fear and are afraid to talk about.

So..if you’re reading this please pick up an advocacy banner.  There’s an enormous amount of work that needs done.  The Susan G. Komen Foundation started with raising awareness for breast cancer.  Mental Health Adovocates have to do the same thing.  We have to help one another do this work.

If you’re local to the Wheeling area you can start your advocacy work by showing up at the NAMI Greater Wheeling Walk on October 21 @Wheeling Park.  Registration starts at 10am.

And…

We even have cool tee-shirts.

 

 

 

Mental Illness Makes You Tough!

true-strength-is-being-able-to

Living with a severe mental illness is not for the faint of heart. You really have to be tough “minded” to handle the many trials and tribulations we face. Consider being able to successfully utilize your mind to climb the corporate ladder only to have that same mind fail you by losing touch with reality.

Imagine having your sister make her way through college and graduate with honors. Then a few years later imagine getting a call from a social worker, four hundred miles away, telling you your sister was placed in the psychiatric ward for evaluation. Forty plus hospitalizations later and an immeasurable amount of heart ache for everyone involved just can’t be described with words.

Imagine being a freshman in college and learning your mother had a manic episode rolled into psychosis and jumped from a 30-foot balcony in her confusion.   Imagine the pain, despair, and confusion those emotions can be when you are living through it.

Some people would say they just “can’t imagine.” Besides who would want to put themselves in your shoes with such human tragedy. These are the stories that never make it to the vernacular of the general population. They have no reason or purpose for hearing or listening to some of the challenges those of us touched by mental illness have had to deal with. I’ve only briefly scratched the surface of my own personal examples. Sometimes they are too painful for even me to recall.

But this brings me to my point, you have to be pretty darn tough to pick up the pieces and move on from life’s disruptions mental illness causes. If you suffer from a mental illness, often a chronic disorder, you will have to learn how to live with it your entire life.  If someone you love gets diagnosed, you will have to learn how best to support him or her.   And the bottom-line is you learn how important it is for life to go on because it does with or without your active participation.

When I reflect back upon my numerous lived experiences with mental illness I think about how I managed to emotionally cope and deal with these major issues often without the help or support of other people. I was expected to accept the situation, cope with it, put on a happy face and move on.

It reminds me of a time when I was working as a sales representative for a Fortune 500 company.  I had just received a call in the morning that my mother had been taken to the psychiatric hospital and admitted. I was still relatively young and deeply affected by her hospitalizations. As a matter of fact when I picked up my manager at the airport I was holding back the tears.

We drove a little while in silence, until she finally asked me what was wrong. I debated for a moment but then I told her what had happened to my mother. She looked at me and said, “Well I guess you’ll just have to focus extra hard on selling your products today.” It was like someone had taken a knife and stabbed me in the heart.

I guess all the years of living with mental illness have made me a stronger person. It has also exposed me to the ugliness of stigma. The very idea that people can be so cold and callous about brain disorders and all the situations we have to deal with.

But as I write these words I truly believe the next several years are going to whiled a wealth of information about serious mental illness. I think we will see attitudes begin to change and people will start getting a clue about what we have to deal with on a daily basis.

I hope some people will finally realize how tough you have to be to live with mental illness. I can’t wait for that day to come and I can’t guarantee I won’t tell people “I told you so.”

Disclosing a Mental Illness

shhh-its-a-secret

Disclosing you have a mental illness is a very tough decision. There are so many issues associated with telling even your friends and family, much less being open about your illness in a public forum, like social media.  From my viewpoint if we are to actively change the stigma associated with mental illness it is important for those of us who live with mental illness to feel comfortable in disclosing it.

I recently read an acticle about disclosing your mental illness diagnosis on-line. The author was an advocate, but chooses to blog and advocate anonymously. I have no problem with her choice, but I wonder about the impact you can make as an advocate living anonymously? Isn’t it important to demonstrate that many people living with serious mental illness can recover and contribute to society?

When writing my blog I decided it was important for me to feel comfortable being completely open and honest about who I am. I wanted people to know I was not ashamed for having a mental illness. In fact, I have worked very hard to live my life without living in shame for an illness I did not ask for and believe is no different than a physical illness from that standpoint.

But then I started thinking about all the reasons why people could judge me and look at me differently because I live with bipolar disorder. I thought about the stigma associated with the illness and how people may judge my competency without ever talking to me or reading anything I may write. I began to fall into the trap of worrying about things that I cannot control.  I worked through my fears and doubts and moved forward with disclosure in a well thought out way.

For all the reasons why you should never disclose your mental health issues, there are equally a number of reasons why it is a good idea for at least people close to you to know. I was always afraid people would not be my friend if they knew about my condition. The truth is some people didn’t want to be friends with someone who had a mental illness, as if I had some kind of contagious disease. But others seemed to accept it and offer love and support.

After deciding I was going to live my dream and become a Mental Health Advocate, I put a great deal of thought into disclosing my illness. My focus is on raising awareness and creating opportunities to have a dialogue about mental illness so that others may understand. I wanted to jump on the band wagon and help eliminate stigma. I really felt like if people knew I was an Olympic Athlete who was affected by a mental illness they could see that it does not matter what your socio-economic status is or what parade you may have walked in, mental illness can affect anyone. It also helps other people who are suffering with the illness to know someone else who is living with it.

So—for all these reasons I felt like it was a good idea to disclose my illness. I let my Facebook friends know the other day on a status update that I was a Mental Health Advocate, writer and speaker and I lived with Bipolar Disorder. The support I received touched my heart and gave me more strength to keep on walking down the disclosure path.

I can’t tell you what is right for you, but I can say I feel empowered to share my journey. And I am glad I no longer hang my head in fear or shame.

Should mental health disorders be treated with medications?

Pillspills

I did not realize it but there is a population of people out there who do not believe mental disorders are illnesses. They don’t believe in the “disease model” for mental health issues and believe people should not be treated with medications. When I heard this I wondered what makes a disorder worthy of an illness label? And why wouldn’t there be something wrong with the brain if you had a psychotic episode?

Some people actually believe a psychotic episode is a “normal” response to certain life events. They also believe most people would do better without anti-psychotics than with them on board.

And then there is the evil empire pharmaceutical industry theory, which says pharma pays big bucks for drugs to be developed and approved so they can make profits, as if the sole purpose for all the scientific work is some preconceived conspiracy. Pharmaceutical companies did not create schizophrenia or bipolar disorder. Sorry but I’m not buying this theory. They research compounds that make a difference and when they are successful they make lots of money. This is the American way. Without the profits there would probably be few life saving medications.

When I heard this view point I was a little shocked. It seems we have come so far with people understanding mental illness as an actual “illness” instead of just a state of mind and something you can control without any intervention. I suppose it really makes a difference as to what mental disorder you are talking about—but who gets to decide what is a serious mental illness that needs medication and what is a disorder that can be controlled with a behavioral modification program. Explain this to a person having a full-blown psychotic episode.

I am all for differing opinions and debates. It’s healthy discourse and keeps everyone in a position to back up what they say. But I’m really confused about why psychiatry continues to have so much controversy in utilizing treatments. I agree that not everyone who is prescribed an anti-depressant or anti-psychotic needs one, but that’s just how it is with every therapeutic class of drugs. There is always over-utilization and under-utilization of different medications.

I have suffered with bipolar disorder most of my adult life and have finally gotten to a point where the medication regimen seems to have stabilized me. I’d hate to go back off all my medication only to find myself very sick again. It’s hard enough to fight depression while trying different medications let alone stopping all medication all together. And I can’t afford to leave mania untreated because it almost always results in a psychotic episode. As far as I’m concerned psychosis is a dangerous state of mind and I don’t want to experience that again.

Just because we can’t see the broken “brain” on x-ray doesn’t mean it’s not broken. There are many diseases that we do not understand the cause. We can’t always know conclusively how a medication really works. Sometimes you have to use common sense and be okay with the unknown. Sometimes you just have to take a leap of faith and trust that people studying mental illness treatments are doing so with ethics and integrity.

 

 

Mental Illness Recovery

The “Recovery Movement” in mental health has been around for several years. I have read different opinions about recovery and I think it’s important to understand what recovery actually means.

A Recovery Definition

According to the National Alliance for Mental Illness recovery is a process that includes having an initial diagnosis, learning about your illness and the treatments available, sharing information about your illness with friends and family and finally doing something to help other people with your illness. Nowhere in this definition of recovery does it talk about resuming your life where you left off before your diagnosis.

Before I read this explanation from NAMI I really thought recovery meant I could pick back up with my life as I once knew it. But realistically I had to learn that I had to accept the fact that I now had limitations I had to consider. I have heard the argument that everyone has limitations and while I agree with this I am coming from the standpoint of when you get sick and because of whatever illness you have, your life as you once knew it has changed. It has become a “life interrupted” by mental illness.

Severe Mental Illness

I will be the first one to admit I love it when I read success stories about people with bipolar disorder, schizophrenia, depression, post traumatic stress disorder or anxiety disorder (classified as severe mental illness) who are living examples of people who have been able to get out and work full time jobs. They have either gone back to work or have changed careers. I get excited thinking about the possibilities for my own life.

Overcoming Obstacles

At the same time, I have to be honest and tell you that we have tremendous hurdles in getting to this endpoint. Our disorders may go into remission but often times we still have to continue taking medications, going to the doctor and/or therapy visits, and closely monitoring our symptoms. So the most important point is that recovery in no shape or form means “healed.”   If anything it means people who have learned how to overcome many obstacles and lead a healthy, happy and productive life. I think people who are living with mental disorders have a strong inner strength. Part of recovery is being able to recognize those key strengths and use them to our advantage.

I am glad there is a recovery movement in mental health. I like the idea that younger people can be given a sense of hope that the proper treatment can help them go on to achieve their goals. But I also think it has to be tempered by the fact that severe mental illness is really difficult to manage and if you are managing it well you are a superstar in my book!

The “Hearing Voices Simulator”

On Monday Anderson Cooper from CNN interviewed Mental Health Advocate and Clinical Psychologist Pat Deegan. Pat, who also lives with schizophrenia, created a “hearing voices” simulator that Anderson experimented with. For 45 minutes one day he wore the IPOD that cranked voices into his ears. As part of the experiment he had to do puzzles and a math quiz while wearing the ear buds. If you are interested you can watch the interview with Anderson Cooper and Pat Deegan on CNN. It was fascinating to hear how much difficulty he had trying to complete tasks and it even affected him while walking down the street.

Since I have experienced a few psychotic episodes as a result of bipolar mania I was really glad to know this simulation existed. It is one thing to try and explain what “hearing voices” is like and another to have someone deal with hearing voices. I hope more people will have access to the simulator; especially people in the media who tend to cover mental illness only when a tragedy occurs.

Even though I want the media to better understand mental illness I still contend that one of the best ways to combat stigma is for those of us who live with a mental illness to continue to speak out about our experiences. Sometimes I forget that I live with and write about mental illness everyday. I have been a student of bipolar illness for the past 30 years. Not necessarily by choice but by necessity. My point is the words and their definitions come relatively easy to me.

Speaking My Truth

About a month ago I was reminded that not everyone knows or understands what a person who lives with bipolar disorder goes through. I was giving an old friend of mine a ride to the airport and he ask me why I wasn’t working in the profession I had been in for 18 years. At first I hesitated and then I decided I was going to speak my truth.

I said, “Well I’m not working in the biotech industry anymore, because when I had a bipolar depressive episode the company I was working for fired me while I was on disability leave.”

Jim replied, “That’s terrible. If you were depressed it must have been more depressing to get fired in the middle of being sick.”

“Yeah it was pretty bad. Right around Christmas time too.”

Jim looked at me and then asked, “What is bipolar disorder anyhow?

“It’s an illness where you experience extreme highs and lows and sometimes psychosis,” I was giving him the shorthand version of the illness.

“What’s psychosis?”

“Psychosis is when you see or hear things that other people don’t see or hear. Or you may get delusional believing things that are otherwise not true.”

Jim looked at me kind of strangely and then said, “Well sorry for asking so many questions I guess I just don’t understand. I’m really trying to understand.”

I was really pleased he took an interest and was willing to have a dialogue about mental illness.   I assured him it was no problem and he could ask me anything he wanted about bipolar disorder.

We rode in an awkward silence for a few minutes and then moved on to a different subject. Even though I admit feeling somewhat anxious I felt really proud of myself for having the courage to be open and honest. I figured the worst that could happen is I would lose a friend, and I already knew how to deal with that.

So I am a big proponent of more people understanding mental illness and especially showing compassion to those of us who live with it everyday. I have always been an Anderson Cooper fan, but now I like him even more. I hope he continues to do more segments on mental illness. The more people talk about it the better chance we all have in breaking down the stigma barriers.

 

 

 

Mental Disorders Facts and Statistics

I wanted to share some interesting facts and statistics from the National Institute of Mental Health. If you click on the link it will take you to the actual site where additional information can be found.

Did you know……

  • Eating disorders have the highest rate of mortality of any psychiatric disorder

o   Go to the NIMH home page and under the tab “New at NIMH” you’ll find the twitter chat link about Eating Disorders.

Anxiety disorders including Post Traumatic Stress Disorder, Generalized Anxiety Disorder, Obsessive Compulsive Disorder and Social Anxiety Disorder collectively are the most common mental disorders for Americans

o   http://www.nimh.nih.gov/health/topics/anxiety-disorders/index.shtml#part7

Attention deficit hyperactivity disorder is one of the most common childhood disorders and can continue into adulthood

o   NIMH ADHD Information

Bipolar disorder effects 2.6% of the U.S. population. Of this amount 82.9% is classified as “severe”

o   NIMH Bipolar Disorder Statistics

Borderline Personality Disorder effects 1.6% of the U.S. adult population

o   NIMH Borderline Personality Disorder Statistics

Depression effects 6.7% of the U.S. adult population

o   NIMH Depression Statistics

Schizophrenia effects 1.1% of the U.S. adult population

o   NIMH Schizophrenia Statistics