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.

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.

I watched this beautifully put together HBO documentary on Monday night.

Mournful and emotional,  “Boy Interrupted” is about a mentally ill boy who committed suicide when he was only 15 years old. Having experienced the same tragedy, I really wanted to see how the story could be told without being exploitative or sensationalized. They couldn’t have done a better job……..the parents put the film together. Both of them are in the film industry, but a good part of the documentary was made from actual “home” movies that they and that Evan, their son had personally filmed. Some of the clips even give you a sense of how difficult life for Evan was when he was struggling with his bi-polar illness that wasn’t diagnosed until he was eight years old. Eight years old??? I’m sure you’re thinking that’s incredibly young…..and it is. But, it happens. And in Evan’s case, he started threatening suicide as early as age five.

His parents did everything they could to get Evan help. Finally by age 10 he was experiencing some normalcy in his life with the help of medication, therapy and family and academic support. Tragically, at age 15 when all seemed to be going well he ended his life by jumping from his bedroom window several floors up. He left a note explaining how disconnected he felt…….something many 15 year old boys will experience. But, for Evan his sadness was overwhelming and his bi-polar illness prevented him from facing another day. In my case, I always say, schizophrenia took my son. – I know he wouldn’t have purposely “ripped my heart out.”

According to the National Alliance on Mental Illness about one in ten children have a serious mental or emotional disorder, but fewer than half receive any mental health services in a given year. Over half of students with a mental disorder age 14 and older drop out of high school – the highest dropout rate of any disability group and many of the teenagers that have a mental disorder “self-medicate” with illegal drugs. Despite effective treatment, there are long delays, sometimes decades, before people seek and receive treatment.

These are pretty grim statistics, but I’m hopeful. As I have said before, I see people every day that have achieved mental health recovery. It’s something they have to work on- every day, and who knows, maybe one day we’ll find a cure or at least something to stop someone from wanting to end their life. Suicide causes unimaginable pain for those left behind.

 In my view, health care shouldn’t be based on profit margins.

It’s a complex problem. One that I certainly don’t know how to solve, but I am a fierce advocate for parity……..equal coverage and care for physical and mental illnesses. Something that mental health advocates have tirelessly promoted for many years. It is critical that mental illness treatment is included as part of any required basic benefit package AND is covered at parity relative to medical surgical benefits consistent with Paul Wellstone and Pete Domenici Mental Health Parity and Addiction Equity Act of 2008.

The National Alliance on Mental Illness also urges that any health care reform package should include:

• Adequate financing in order to guarantee that health reform lives up to its promise of delivering comprehensive, affordable coverage;
  Income-based standards for premiums, co-payments, deductibles and all out-of-pocket health care costs;
  Premium subsidies on a sliding scale up to 400 percent of the Federal Poverty Level along with limits on cost sharing so health coverage is affordable for all American families;
  An expansion of Medicaid that strengthens and maintains Medicaid’s role as the base of coverage for current mandatory beneficiaries;
  Improvements to portability, enrollment, and renewal to maximize coverage, minimize red tape, and provide stability for all Americans;
  Regulations that prevent insurance companies from discriminating based on health status, gender, and occupation;
  Guarantees that quality, affordable health care coverage is available across the country and that individuals and families have options in selecting health plans;
  Financial support and incentives for primary community-based care — especially for children and adults living with serious mental illness;
  Adequate cost savings to improve long-range fiscal stability;
  A strong employer responsibility requirement with penalties for those employers who do not offer coverage based on total payroll rather than penalties tied only to employees who receive income subsidies;
  Sufficient assistance for states so that federal health reform does not impose an unnecessary burden on already strained state budgets, and that does not punish states that have chosen to expand Medicaid and SCHIP coverage above federal requirements.

And, please call your congressional representative  and tell them what you want!  They need to hear from us! Part of good mental  health is access to quality care…….for the body or the brain.