I have bipolar disorder and it’s not my fault

I’ve been really open about my struggles with bipolar disorder.  Before I had a good handle on this illness it really rocked my world.  I’ve come to learn that bipolar disorder will destroy your life if you don’t get the proper treatment and learn how to manage the condition.  It can be life threatening during times of severe depression episodes and suicidal thoughts.  It can put us at risk during manic episodes which often lead to psychotic episodes.

After my initial diagnosis I felt terribly ashamed.  The other day I was thinking about an analogy people might be able to relate to.  If you’ve ever had a night of drinking way too much alcohol and you engaged in embarrassing behaviors, the next day you might wake up with not only a hangover but guilty feelings about your behavior.  The things you said and did while drunk didn’t take away the fact you said and did those things.

This is what happened to me during manic and psychotic episodes.  I’d say and do things and then when I was stable I’d have to deal with the guilt of what happened.  The guilt leads to shame and the terrible tapes rolled in my head about what a bad person I was for having been sick.

But after many years of learning about bipolar disorder, I don’t feel badly about what happened to me while sick.  I’ve come to learn that I have bipolar disorder and it’s not my fault.  What is my accountability is now that I’m stable I need to manage my condition so well I won’t ever end up in a compromising position again.

But if for some reason I have break through symptoms, I’m not going to be ashamed.  I’m going to be proactive and do everything I can to manage my condition.  And if I have moments where I feel a little paranoid, make up a story or two based on that paranoia, I’ll live with it too.

One day people are going to realize mental illness doesn’t make you crazy, it just makes us vulnerable.  I wouldn’t blame myself for having cancer.  I’m not going to blame myself for having a mental illness.  And neither should the general public.

 

 

 

 

A Letter To All The Bipolar Warriors

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Every so often I take a look at the blogs I have written over the past four years and see which ones people view the most.  Tonight I noticed one of the most popular was “Rebuilding a Bipolar Life.”  It was written almost four years ago.  It had to do with my quest to work on my spiritual self.

Another blog that has been very popular has been “Bipolar Disorder Destroys Life and then what’s next?”  It was written a little over three years ago.  If you’ve been following my blog or Facebook page you probably know I have found my “what’s next.”

After reading the blogs and comments I’m inspired to write a letter to my fellow bipolar warriors about some of the things I’ve learned from reflecting back in time.

Dear Bipolar Warriors,

I’m not sure where you are in the journey of living with bipolar disorder.  You may be newly diagnosed and confused as heck about this illness.  You might still be struggling trying to find the right combinations of medications.  Like me, you may have experienced a significant amount of loss because of bipolar disorder.  Maybe you’re kicking it and have mastered how to live well with bipolar.  Wherever you are on the journey here are a few things I’ve learned along the way.

Living with a chronic mental illness is challenging.  Okay.  That’s clearly an understatement.  There are challenges with people who are close to you understanding the illness, accepting that sometimes you’re not always going to feel well and giving you a chance to live to your potential when you are well.  There are complications with relationships.  It all gets better over time.

Some days it gets frustrating to have to fill pill boxes (I fill three weeks at a time).  But looking back I can tell you there was a time when I would sit on the edge of my bed, dump the pills in my hand and begrudge having to take them.  I would think, “I’m sick.  Why me?”  Then I would swallow them and go to bed feeling “less than.”  Fast forward over three years, it’s just part of my every day habit.  The pill boxes make it easy.  It’s a habit and I rarely ever forget to take the medications.  That’s what has been keeping me healthy.

But.  It doesn’t mean I have to like the whole process.  I don’t like having to call in the pharmacy for all my meds.  It’s a pain.  Some days I wish I didn’t have to do this, but it’s all part of managing the illness.  Without meds I have no idea where I’d be and I’m not ever going to take that chance to find out.  One could say, “Been there, done that.”  If you’re curious about that journey you can find my book  “Bipolar Disorder, My Biggest Competitor” on Amazon.

I am a strong proponent of finding the right combination of medications.  Besides my own story, I have my mother and sister’s examples and almost all the people who I have met needed medications to deal with this very tricky illness.  But it’s a bear finding the right ones.  Don’t give up.  Keep trying.  If you don’t like the doctor you are seeing, find a new one.  Learn about the medications for bipolar disorder.  Click here to find information on medications.

I can also share with you that recovery is possible and very likely if you have the knowledge, determination and access to care necessary.  But it’s also the hardest thing I’ve ever done in my entire life.  For those who don’t know, I’m an Olympic athlete and that was pretty darn challenging.  Recovery makes training for the Olympics seem easy.  And let’s not forget recovery does not mean “cured.”  It means different things to different people.  For me, it means I can use my talents and skills and contribute to my community.  It means I live a peaceful existence.  And I mange my illness to the best of my ability.

But.  There are other warriors out there who are in pain.  They’re having a frustrating time with dealing with bipolar.  Medications are causing bad side effects.  I understand.  What I can tell you from experience is don’t give up.

I’m gonna sum it all up and say what has worked for me might not work for you.  But I can tell you that you must have a desire to get well, dedication to find a successful treatment plan, discipline to stick with the treatment plan and the determination to beat this very challenging competitor.

Good luck warriors.  You are not alone.

Amy

Brave souls change hearts and minds!

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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.

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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

Finding my vulnerability

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“I found it much easier to stand up for other people who may not be able to advocate for themselves than allowing others to help me.  When I finally reached rock bottom and I said those words to my sister, “Help me.  Please help me.”  It was the most vulnerable moment of my adult life.”   Montana Jail Journal- January 18, 2013

In my opinion mental wellness has a lot to do with personal growth.  I know it sounds trite to say, but I was on an expedited train of personal growth while I sat in a small jail cell in Montana because of an under-treated mental illness.  I just didn’t know it. Sometimes when the only thing one can do is think, read and write personal growth opportunities are abundant.

I’ve been reading Brene Brown’s most recent book, “Braving the Wilderness: The Quest for True Belonging and the Courage to Stand Alone”.  I’ve been fascinated with her work and all the many lessons I’m gaining as I read and digest each chapter. I was pleased with myself that I had actually been practicing some of what she suggested.  Having been in pure survival mode from bipolar disorder for many years to finally being well enough to embark upon self-reflection and personal growth is making me very happy.

She writes a great deal about belonging.  It seems like a paradox to talk about standing alone, braving a wilderness and belonging.  But this quote kind of sums it up–

“Because true belonging only happens when we present our authentic, imperfect selves to the world, our sense of belonging can never be greater than our level of self-acceptance.” 

This statement rang so loud to me.  All the people who live with a mental illness who are living in shame at this very moment came to my mind.  I’ve been there, I know what that’s like to not have self-acceptance, and therefore not belong.  I’ve felt like an outcast with the people who were closest to me.  When you blame yourself for having a mental illness it’s kind of hard to experience a deep level of self-acceptance.

As I’m blessed to experience a time of peaceful knowing, I keep thinking about all the people who need to hear, “you have a mental illness and it’s not your fault.”  When I sat in an Idaho psychiatric hospital and I let those words resonate inside of me, I could feel the shift in me emotionally.

Self-acceptance is something people pay a lot of money to get.  But it’s really not anything you can buy.  It comes from within.  It’s an internal, quiet voice of strength that tells you you’re okay.  It also means that we accept all of who we are–all our life experiences.

This is something very difficult to do when handed the additional challenge of having a mental health condition.  Think about it-if you’re fighting depression the last thing on your mind is accepting yourself.  But here’s the catch, when we accept our experience for what it is it can actually help us to heal faster.  And certainly if not to heal, than to have the energy to fight depression.

Funny thing is…I can read Brene Brown’s quote and smile.  I have experienced it and believe it is true.

Reading her book prompted me to watch her Ted Talk on Vulnerability.  I could probably watch it 100 times and still learn something.  But this whole idea of vulnerability peaked my interest.  Because as much I hated jail, it was a time in my life when I asked for help.  I was extremely vulnerable.

Yet, though I had a long journey ahead of me, those three weeks in jail changed my life.  I was learning to embrace vulnerability.

There is much of Brene Brown’s research that can really be applied to understanding why it’s so difficult to eliminate the self-stigma of mental illness.  I hope to take a deeper look at that and write about it on a future blog.  Until then, check out Brene Brown’s work.  It’s very enlightening.

 

 

 

 

 

 

It’s not sexy to be a mental health advocate

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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.

 

 

 

Remember – Mental Illness is The Enemy!

Several years ago I received a call from a friend of mine who wanted to tell me she was diagnosed with breast cancer.  It was a rather traumatic diagnosis for her to hear.  Certainly life threatening, but also treatable.  I was impressed with how she dealt with it.  She made cancer her enemy and did everything she could to fight against it.  And you know what?  She beat it.  She is now over 15 years cancer free.

What I’ve learned about mental illness is that it is also life threatening.  From the first time I experienced suicidal thoughts as a sophomore in college to the relentless dogging of “you should just kill yourself” tapes that played in my mind a few years ago.  I learned from the time I was twenty years old that depression was and will continue to be my number one enemy.  It threatens my life and makes me vulnerable at times to the hopeless thoughts that wander aimlessly into my brain.

The difference between cancer and mental illness is that there is a cure for many types of cancer.  There’s no such thing for mental illness of any kind.  Of course there are medications that make it more tolerable, but nothing that takes away all of the symptoms.  It’s a fight.  Sometimes a daily battle and other times an intermittent harsh reality of living with a chronic illness.

If you ask most people if they were afraid of cancer they would say, “yes.”  No one wants to get cancer.  But people are afraid of mental illness for all the wrong reasons.

Many people have no concept of what it’s like to suffer from so much anxiety a person can’t leave their house.  People still believe a person with depression just isn’t trying hard enough and he’s just plain lazy.  Those with bipolar disorder are labeled as trouble makers and moody.  People with schizophrenia – just plain crazy.

When my friend went to the doctor for her breast cancer consultation, I went with her.  As a matter of fact, I jumped on a 2 hour plane flight to go to her doctor appointments with her.  I wanted to show support.  I wanted her to know she wasn’t alone in the fight against her number one enemy.  The disease that was threatening to take her away from all of us much to soon.

This is how we all should rally around those who are struggling with mental illness.  The enemy is not the person who has the illness.  The enemy is the mental illness.  It’s the disease that causes an interference in thinking, emotions and behavior.  It affects the most important organ in our entire body – the brain.

Yet, those who have mental illness are often left to fend for themselves.  Especially when they aren’t fun anymore.  When the struggle is the most difficult and support is truly needed, many are left isolated and alone.  That isolation leads to a worsening of symptoms.  A more complex illness.

I want people to know that my bipolar disorder is a serious life threatening illness.  I manage it well.  But the moment I let my guard down, the minute I miss a day of taking medication, the days I don’t get enough sleep, is when the enemy threatens my life and everything I have worked hard for.  The enemy nearly destroyed me and I’m not going to let that happen again.

I just wish everyone knew mental illness is the enemy.  And if we are not diligent it will continue to steal our loved ones from us in one shape or form or the other.  Sometimes the difference is having a team to fight the illness with us.

The next time your loved one complains of depression symptoms or has a panic attack, offer compassion and a kind word.  Sometimes all it takes is saying, “Are you okay?  How can I help?”

 

“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.

 

 

I AM Depression…

I’m the fog clouding the pathway of your life journey. Sometimes I come even when the sun shines. I’m eerie and heavy. I make it hard for you to see. I cause deep emotional pain. But I’m invisible to others. Only you know I’m here.

My presence is haunting. I get inside your mind and shout ugly things. I scream, “You’re not worth anything. You’re a failure! You’re lazy.” Then, I sliver up to you when you least expect it and tell you the world would be better off without you. I tell you I’ll make the voices stop, if you’ll just make a deal with me.

Then, you cry. I like it when you cry. I like to see what effect I’m having on you. When you wipe your tears I’m still here. You can’t cry me away. I don’t like other people around you, because they tell you to fight me. I convince you—you’re better off alone.

Alone. I’m the only one who controls you. I love polluting your thoughts. It gives me pleasure to watch you fall deeper into my grasp. My ultimate goal is to fill you up with nothingness. You’ll only be a shell of yourself. People will leave you alone. You won’t be fun anymore. But I will be with you. I won’t let go. Please don’t try to fight me.

You start to whisper a prayer. I hate prayers. Prayers are hopeful. Prayers destroy my power.

You take yourself to the doctor and ask for help. I hate the doctor. The doctor will help you.

You get a pill box and start taking medication. I hate medication. It causes my power to fade.

You make yourself fight me, but I’m a tough opponent. I’m not going away easily.

You start reaching out and talking to others. They know my secrets.

You win the battle. But there will be more. I’m always lurking. Waiting to reappear.

I AM depression.

 

Football & Recovery

I am an athlete.  I might not be in Olympic caliber condition, but I will always be an athlete.  I am not the greatest fan in the world, but I did watch the superbowl.  I really could have cared less who won or lost, but I became fascinated with the way Tom Brady handled being behind by so many points.

Stressful.  Frustrating.  Emotional.  Yet he never quit.  You can dislike Tom Brady and the Patriots, but you cannot discount the fact that this guy never gave up.

In my world of recovery and mental health advocacy I cannot think of a better comparison for how I feel about my recovery journey.  I made it all the way back.  I looked back today and thought about how many years and I do mean years, where I struggled relentlessly.  It doesn’t mean that those years never had a good time or two, it just means they were long, hard, and draining.

As I sat in my new NAMI of Greater Wheeling office today I really just wanted to pinch myself.  I started on this mental health advocacy journey three years ago and since then I have worked my way to becoming an Executive Director of a non-profit organization.  One that focuses on advocacy for people with mental illness and their family members who support them.  I have found my passion and my cause.

If you knew where I was four years ago, you might not believe I could make a comeback.  If you want to find out what happened and how I did it…watch for the release of “Bipolar Disorder, My Biggest Competitor.”  It will be released on August 22!

No matter what people say about me the one thing they can never discount is the fact that I never give up.

 

Why having a mental illness makes you strong

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I have been putting the final touches on a book I am writing, “Bipolar Disorder My Biggest Competitor.”  It has made me look deeply into myself as a character in a story.  It is the strangest thing reading about this character and knowing it is me.  But this experience has had a profound impact on how I see myself–sometimes victim, sometimes hero, and yes sometimes villain.  But always strong.

If you live with a mental illness you know exactly what I am talking about.  The times when you lie in bed feeling miserable and wish the depression would stop haunting you.  And then you do it–you make yourself get up and get out among the living.  In that moment you beat it.  You won.

How about the times when you thought you might never get well again, but kept battling and recovered?  Even in those darkest moments you found the beacon of hope glaring through the fog.

Then there are those times when you get “the look” from other people who know you live with a mental illness.  It strikes the chord of paranoia and you wonder, “What is she thinking about me?”  But you coach yourself through it and tell yourself, “It is okay.  I really don’t know what she was thinking.”  You overcome the negative thoughts.  You beat “the look.”

What about those days when the trusted family member makes a joke about your mental health?  You feel horrible but can’t get any compassion from the people closest to you.  But you hang in there and keep fighting.  You hope tomorrow will be better.

Believing mental illness makes you strong is opposite of what people have told us about it.  Remember every battle you have had to fight, every bit of shame and guilt you have faced head on, and every medication you have to take just to feel somewhat “normal,” these are the things that make you strong.  Stronger than you may think you are.