“Is bipolar disorder contagious?”

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I’m driving home from the store with my 82 year old mother and we start talking about my book, “Bipolar Disorder, My Biggest Competitor,”  In many ways the book has unleashed good ole’ Esther.  Since I wrote about some of her struggles with bipolar disorder, she has talked more about it in two weeks, than I believe I have heard in more than 30 years.

Tonight she says, “People need to understand when you’re psychotic you don’t know what you’re doing.  But people don’t understand.  They think there’s something wrong with you and that they’ll get it too if they hang around you.”  “Mmm…is bipolar disorder contagious?” I asked jokingly.  “Some people think it is.  Like you have some horrible disease and if they come around they’ll get it.”  I laughed and we continued our drive home.

Then it hit me, after 30 years my mother finally articulated how bad she felt when her relatives stopped coming around.  They literally stopped inviting her to their houses.  She became an outcast.  The “crazy” sister.  Shame on them.  It’s not like all their lives were perfect either.

So, as a family member of a loved one with mental illness, I’m quick to defend my mother and sister.  But when it comes to me living with a mental illness and becoming an outcast myself, I sort of just give everyone a pass.  I suppose it’s because for so long I felt like I caused my own suffering.  It was my fault I had those episodes.

I ask my mother, “Who was there when you went through your first tough time?”  “You were,” she answered.  “Your dad didn’t know what to think.  But he would come in the house and ask me if I was doing alright.  He didn’t understand it, but he tried.  I’ll give him that”  I smiled and said, “There were a few people who I could have thrown under the bus in my book.  They did some not so nice things.  But I wanted to take the high road.  And truthfully, I didn’t want to spend time having a pity party for myself.  My life is far too blessed to feel sorry for myself.  I am exactly where I am supposed to be.”

However, as we drove further down the road I realized Esther really did have a point.  Some people treat bipolar disorder like it’s contagious.  As if a brain disease can magically rub off.  Perhaps that’s why they stop answering calls, not returning text messages or give you all your pictures and press clippings back, as one uncle did with me.  He had become ashamed of who I was, and when I needed him most he turned his back on me.

At the end of the day I just move on and say, “I’m not crazy, just contagiously bipolar.”  Whatever that means.

 

 

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I witnessed stigma in the making today.

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Today I had the opportunity to attend a lunch n’ learn on bipolar disorder.  The gentleman presenting was a clinical psychologist who I have known from being on a working group together.  He is a very nice man.  However, today I witnessed one of the things that contribute to the stigma of mental illness in an astounding way.

His talk started out very informative about bipolar disorder signs and symptoms.  He explained really well about mania, depression and everything in between.  But then the whole talk took a downward turn.  He started sharing six stories about people he had involuntarily committed.  If the story had been told from a factual standpoint on how people with bipolar disorder can put themselves at risk, I would have been fine with it.  Except the stories told were laughed at and even the audience laughed as well.  At one point a YouTube Video was shown of a man who said he was experiencing a manic episode.  It was over the top.

I guess you had to be there to really understand my perspective.  I did not want to be rude and get up and leave, so I sat through a very painful hour of stigmatizing people with mental illness as crazy, looney and psycho with no hope for recovery.  At one point I considered raising my hand and saying, “I am one of those bipolar type I patients who have recovered.  What can you say about me?”  I decided against that strategy.

What I did do is tell the organizer who joked about having a manic episode based on all the criteria he just learned that the talk needed to be more balanced.  Yes there are people with bipolar disorder who run naked in neighborhoods.  Yes there are people with bipolar disorder who are homeless.  But there is also another side.  These people are someone’s wife, husband, friend, daughter, son, brother, sister etc.  .

Rather than embarrass the speaker I decided to have a private conversation with him at the end.  I said to him, “I have bipolar disorder type I.  Did you know that?”  “No I didn’t know that,” he said rather surprised.  And then I said, “I have my own sensational stories.  But I am also an Olympian, have a master’s degree and have worked in Corporate America for many years.  And by the way, people do recover.”

I think he was shocked that I said that to him.  Of course I was very diplomatic, but it really struck a cord with me.  I will have the opportunity to speak with this audience in March.  I plan to spend a great deal of time talking about stigma.  I hope what I say will help repair some of the damage that was done today.

How does Orange is the New Black handle Mental Illness

If you are a Netflix viewer you may have recently watched Season 4 of Orange is the New Black and could not have missed the storylines with mental illness.  It was not a subtle portrayal.  Mental illness was everywhere.

The character who saves another inmates life was hearing voices and experiencing delusions.  They gave us the back story and she was a person with mental illness who lost her job as a journalist when her mental illness started to get worse.  Loly ends up homeless and eventually arrested for disorderly conduct.  She gets slammed on the ground by two police officers who come upon her because people in an upscale neighborhood were complaining about her being there.  The police throw her on the ground and handcuff her while calling in to dispatch how she may be “drunk” or “psychotic.”  This is how she ends up in prison.  The police officers obviously don’t have crisis intervention training nor mental heath first aid.

By the end of season four Loly gets locked up in the forensic psych unit for allegedly murdering someone.  She starts to scream and cry while the audience is shown someone in the background who is yelling and is restrained forcefully.  Everyone in the prison knows you don’t want to get sent to the “psych unit.”  It does foster a bit of the stereotypical way we view inpatient psychiatric care, then again it is a prison so the psych unit might be portrayed appropriately.

The one thing that bothered me about this scenario was the fact that she had to have a mental illness and be accused of murder.  Everything else was really handled so well.  It is likely that a consequence of untreated severe mental illness can be joblessness and homelessness.  It happens more frequently than we like to believe.  But the murder part I could do without (spoiler alert:  she actually didn’t do it but thinks she did).

Then there was the character Mr. Heely.  He is the inmate counselor who walks into a lake with the intention of taking his own life.  In just the right time he gets a phone call from work and realized Loly’s delusions about saying their was a dead man buried in the garden were actually true.  By the end of the show he is voluntarily admitting himself to inpatient psychiatric care that is actually scripted quite well.  The last season shows him sitting on his bed knitting – minus the knitting needles which they don’t have in a psych unit because people may use those to hurt themselves – the gist is right on the money.

The courage of him taking himself to the psych unit is amazing.  One of the few men on the show and he admits himself for psychiatric care…wow!  This is a little more hard to believe because it is very difficult for males to admit they have a problem let alone seek treatment.  But good for the show creators to lead us in the proper direction of how it should be done.

One of the main characters is called “Crazy Eyes.”  She actually had been doing quite well with her mental health until the last few episodes.  But as the name implies she does have a tendency to get a little “crazy.”  She gets violent after being provoked and beats someone up.  She goes into a “zombie” like trance and then has a horrible accident.  The way the character has been developed you know she is a short fuse away from having some type of tragic accident.  But she is also vulnerable and that point is made very well.

Overall, I would have to give the creators of “Orange is the New Black” an A- in trying to tackle mental illness.  They obviously put a great deal of thought into how to delicately dramatize a person’s fragile mental state.  A significant amount of time was spent teaching us about hallucinations and delusions through a character’s suffering.  I like how they did not shy away from any of it.

I can see how all of it might just be very close to reality.

 

 

 

It’s Time to Ring the Bell

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This is a Mental Health Bell:  A Symbol of Hope – which was created in 1953 made of all the chains and shackles from mental asylums in the United States.  The bell is now the symbol of the oldest mental health advocacy group – Mental Health America.

I am a person who lives with bipolar illness and I am also an activist.  I desire to be a part of social change.

There is a movement in the world of mental health awareness.  More people are beginning to come forward and own their illness publicly.  Where you see the most of this happening is with social media.  There are many twitter accounts and blogs of people who live with mental illness advocating for change.  Expressing their viewpoints openly, honestly and courageously.

But what is the change we seek?

I am interested in bringing awareness of mental health conditions and eliminating stigma so people will not feel ashamed to seek help.  I don’t want to feel patronized or discriminated against because I have publicly declared I live with a mental illness.  I chose to share my personal struggle because I wanted to help participate in social change.  I want the young people I talk too to know you can live with a severe mental illness and still be successful.

But I have to tell you even in the places where you would think pure advocates would exists stigma flows well.  There is a term people use to describe those of us who live with a mental illness it is called “consumer.”  I don’t care for consumer because it implies that I am different from everyone else.  It rings with “less than” and sort of implies I am my diagnosis.  But the word is not going away anytime soon.  And neither are prevailing attitudes about people who live with a mental illness.

Change takes time

In 1909 the first Mental Health Advocacy organization was created by a man named Clifford Beers who lived with bipolar illness.  He was hospitalized for three years and was subjected to poor treatment at the hands of his caretakers.  At one point he was placed in a straight jacket for 21 days.  He was also a profound business person on Wallstreet and a Yale graduate.  A year after he was released from the institution he started a movement that helped change lives.

Now is the time

I have discovered that now is my time to ring that bell.  With so many courageous people who have lived before me to show the way on how to become an activist, I am up for the challenge.

The time is now to join the movement.  If you are reading this blog I want to encourage you to get involved in social change.  Join an advocacy group, write a blog, tweet, form a support group, use your voice and ring that bell!

“I decided to stand on my past and look my future in the face.”  ~Clifford Beers, Founder Mental Health America

 

 

 

 

Life with Bipolar Disorder

Have you ever stopped to think what it may be like to live with bipolar disorder?  Probably not, unless you have a loved one who is impacted by it or you are personally affected.  So I want to take a few minutes to describe what living with bipolar disorder is like for me.

First of all, living with a mental illness affects your self-esteem and confidence.  There is not many things worse than getting a psychiatric diagnosis by our cultural standards. This is why I get so passionate about mental health awareness.  You cannot receive treatment for something if you don’t know what you are dealing with and yet the moment you get that “label” it can change how you think about yourself and how others see you.

Second, treatment is available and in most cases it works.  The downside is that it can take ten years to find the right combination of medications that work for each person.  Now for a moment imagine what it would be like to constantly change medications.  I believe I have taken more than 30 different meds before finally finding the right combination.  It is a long frustrating journey.

Third, medications have side effects.  It takes time and sometimes learning lessons the hard way before you understand for most people you can never stop taking medications for the remainder of your life.  No matter how many articles I have found where people say they get along great without medications, in my experience it is never an option for me not to take bipolar meds.  Even though the side effects of weight gain and slow metabolism feed into that whole idea of lack of confidence and self-esteem, it is still far better to be overweight than mentally unstable.

Finally, once you have recovered no one would ever know you live with an invisible illness.  You cannot see bipolar disorder and unless I hadn’t told the world I live with it you would never know.  This is one of the many benefits of recovering and that I can attest is something you can do!

Living with bipolar disorder is just a fact of life for me.  But the journey was long and arduous before I could get to this point.  If you are a family member of a loved one who lives with bipolar disorder keep the faith your loved one will get better.  And if you live with bipolar disorder keep on fighting it will get better.

Mental Illness A Family Disease

This past week I have come into contact with several people who have loved ones who are struggling with mental illness.  I can understand their pain because I have lived the experience myself.

I remember the day when I was 19 years old and found out my mother had almost died during a mental health crisis.  I had just arrived home from a rather tumultuous freshman year of college, my Olympic dreams nearly shattered and my mother, my biggest supporter unable to help me and in fact needed me to help her.

When someone you love has a mental health crisis you don’t have a lot of time to come up to speed on all the terminology that healthcare professionals start to throw around.  Psychosis, manic-depressive, schizophrenia, involuntary commitments, state hospital vs. private institution, etc..etc…etc.

We didn’t have the internet over thirty years ago, so I packed up my notebook and headed to the library.  (After all these years I have still kept my notes). I was on a crash course to understand a jargon that was foreign to me.  Cancer I understood.  Mental illness I could not comprehend and yet I had to find a way to help get my mother back again.

It was one of the most difficult times of my life.  People who do not have a loved one with mental illness cannot understand the enormous amount of pressure it is to keep secrets about why someone is or is not available.  In some ways it is like their lives get erased, if only temporarily.

For me in all my youthfulness, went about telling people that my mother had a mental breakdown.  Most often I got surprised and shocking looks and often a change in conversation because people did not know what to say.

The sad thing is here we are over 30 years later and things have not changed much.  We are still talking about the stigma of mental illness, our society continues to fear what they do not understand and people living with mental illness still live in secrecy and shame.  And those family members with loved ones still don’t have a basic understanding of mental illness.

The only way I know how to help with change is to talk about mental illness and continue to share my personal journey in the hopes it may help other people.  I dealt with my difficult situation the only way I knew how which was to talk about it.  It helped even if most people did not understand.

One of the most unsatisfying lessons has come full circle.  Someone who I had admired most disappointed me the most during my mother’s illness.  But sadly years later this person who showed no compassion would be struck with her own mental illness.

There is no mincing words:  mental illness is a cruel disease that affects the entire family.  The best thing we can do is be kind to one another.  You never know if your family will be affected by mental illness too.

More than a Label

Today I have reached a milestone in my recovery journey.  I no longer think of myself as mentally ill.  Oh yes, I still have to live with bipolar disorder and manage it, but I have been enjoying a period of sustainable wellness.  To be honest, I never thought this day would happen.

For several years I battled very severe depression with brief moments of manic episodes, but none that were ever enjoyable.  I fought countless days to function and wondered if I would ever become a contributing member of society again.  Well, the days have arrived.

In this recovery journey I have read numerous articles about people who got sick and then got well and moved on with their lives.  I could see it was possible, but I did not know if it would be possible for me.  But now here I am.

Because of where I have evolved too, I no longer feel the need to write about pain and sorrow.  I am not drawn to write about my past demons.  I am at peace with my past and so it shall stay there.

But what I hope to do is write about how I have recovered.  The ins and outs the ups and downs.  The journey has been nothing short of a miracle and at any time along the way I could have chosen to give up.  But…I didn’t.  That’s the biggest secret and it is obvious….you can’t give up no matter how tough it is and how much it hurts.  You must persevere and continue to expect a good outcome.

So I am beginning to live my newly created life.  Filled with dreams and possibilities and potential.  I have learned I am so much more than my diagnosis, I am truly beyond bipolar disorder.  Although there was a time in my life when it completely consumed me.  By the grace of God that time is over and that book has ended.

The new book has begun.

If you have a mental illness I want you to know that it is possible to get well.  You can have a satisfying life and contribute to your community.  Believe in the possibilities.  And most importantly don’t give up.  You may be very surprised how things turn out.

The Bipolar Disorder Canyon

It seems like yesterday when I hiked the Grand Canyon, but in reality it has been many years ago.  Much time has passed and most of the last 15 years I have spent battling a mental illness.  It has consumed my energy, stolen away many of my dreams, and kept me from doing the things I love to do.

But somewhere deep inside of me I have tapped into the fighting spirit, the very same spirit that led me to hike that beautiful canyon and strive relentlessly back to the top of the mountain.

The Grand Canyon hike is very opposite of a typical hike up a mountain and then back down again.  When you set off to hike the Canyon, you start at the top and descend down 13 miles to the bottom.  While it seems only physically challenging to go up, it is equally difficult to pound down the winding trail to the bold and rushing waters of the Colorado River.

I think hiking is a great deal like living with a mental illness.  When bipolar disorder started to get worse, I descended rapidly into an emotional abyss.  By the time I got to the bottom of understanding bipolar disorder, I had to climb a long way to get my life back again.

There were days when I really did not think I was going to make it.  The challenges were so steep that I wondered if I could overcome the odds and beat my illness.  Winning is something I stumbled upon with every step I took to recover.  I count the small wins, like learning to manage my symptoms and understanding how bipolar disorder affected me.  The large wins were finding a good doctor and searching to find the right combination of medications.

On a long hike a blister that forms is terribly painful and makes it more difficult to continue walking.  Living with bipolar disorder rubs a lot of blisters all over the body.  It is only when those blisters heal that the pain goes away.  Sometimes it takes years for that to happen.

Learning to cope with all the unexpected challenges in life is what makes it all very interesting.  When you are in the desert hiking at over 100 degrees the very intensity of the heat can leave you exhausted.  When it comes to mental illness, equally challenging is dealing with those external factors like stigma, that can drag a person down and keep her in silent suffering for years.  Not being aware of those feelings of shame, blame, guilt and feeling “less than,” strips a person of much needed energy to make the journey.

What do you do when you are facing a steep climb?

What works for me is putting my head down and taking one small step at a time.  Sure, it gets frustrating and at times I can honestly say I have wanted to give up.  But the hopeful promise of reaching the goal I set out to accomplish keeps me in the game.  The blisters have healed and the walk is much more enjoyable.

I have no plans to descend down a mountain that I cannot walk back up again.  I might take a few steps down every now and then, but I really focus on enjoying the view right from where I am standing.

I pray I never need the amount of perseverance or energy that it took to climb my way out of the bipolar canyon.  It’s always going to be there, but I have learned to respect it and cope with what challenges it has caused me.

Disclosing a Mental Illness

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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.