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.

 

 

 

 

 

 

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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.

 

New Book is Coming Soon!

Just wanted to let you know I have been working on a memoir called “Bipolar Disorder, My Biggest Competitor.”  The day is getting closer, but I still have lots of work to do.  I will keep you updated when it is finished.  I am looking for a Mental Health Awareness Month launch date!

The story will really highlight lots of injustices those with mental illness deal with.  I am hoping the book will give a voice to many people who often don’t have one.

So…stay tuned for more updates!  amygamble_1amygamble_2amygamble-upright_nospine

 

Facing the Truth

Her blinders have been removed

She has taken her gloves off and removed her coat

She sits in stillness with peaceful knowing

Knowing from the soul

Inspired by the spirit

 

The storm came along with no warning

It whirled and twirled devastation

Leaving people shocked, hurt, stunned and dismayed

The creation of fear perpetuated

Numbness permeated and opened wounds

 

Left behind were the remnants of missing pieces

The young woman and old soul stood strong

But the powerful force of the storm threw her to unconsciousness

When she awoke it was apparent to her she was the storm

Crushed by the aftermath of viewing what she left behind

 

Deeply saddened with what she unknowingly had done

Egoically embarrassed, ashamed, and guilty

Incapable of seeing what the mirrors were telling her

Her prayers were answered one day

She ask to be shown so she could heal

 

She prayed for strength and courage

She prayed for forgiveness of self and others

She lay helpless crying for hours in her bed

She faced her naked body and viewed her own destruction

 

Overtaken by grief, hurt, sadness, disappointment

But inspired by unconditional love

 

She is a person hurt by her past

She is a human being

She is not defined by labels

She is not willing to give up

She is walking her journey one step at a time

 

Who is she?  Who is this woman with such great strength?

She is not alone

 

@amyjgamble

amygamble.com

 

5 Reasons why I don’t like psychiatric medications – but I still take them

Overview

I am guessing you may have heard the reasons why people don’t like to take medications for psychiatric conditions.  It all sounds so easy, “It’s just like taking a blood pressure pill.”  “It’s no different than taking insulin for diabetes.”  Well, the truth is it is very different and there are several reasons why.  Here is the top 5 on my list.

#1 – They make you gain weight

There are few classes of psychiatric medications that do not cause weight gain.  With the exception of some medications for anxiety, almost all the medications for depression, bipolar and schizophrenia cause weight gain.  I managed to gain a slim 80 pounds!  It seemed like every time I was put on a new medication I gained 20 pounds.  I don’t know anyone who likes to gain weight.  But the reality is medications made me feel better and if I have to work at losing weight that’s just the trade off.  It is a valid concern for those of us with a mental illness.

#2 – Some make you feel like a “zombie” from the Walking Dead

Take a blood pressure pill and you rarely have a side effect.  On the other hand, take some high powered psychotropic drugs and you might feel like a zombie.  Usually this side effect goes away in time, but if it does not I encourage people to talk with their doctor to help adjust the medication or the dosage.  No one wants to feel worse and sometimes that is what happens.  Older medications are notorious for causing lethargy, work with your doctor there are many choices that might not make you feel as bad.  Above anything – don’t stop taking your medication without talking with your doctor first.  There can be some serious effects from stopping abruptly.

#3 – The Stigma of Mental Illness

It is the shame and misunderstanding that comes from stigma.  No one wants to feel as if they are not “sane.”  It is about credibility.  Not being different from other people.  We all want a sense of belonging, but not to a group that is discriminated against.  This no longer effects me much but in the past this really bothered me.

#4 – The medical community does not know the long-term effects

Less funding for research means less understanding for the long-term effects of medications.  Especially for a class of drugs called anti-psychotics.  They are used for many off-label conditions and the long-term effects are truly unknown.  What we do know is that people who have schizophrenia live on average 25 years less than other people.  We don’t know if that is related to medications or a number of other factors.  It’s hard to want to continue taking a medication without knowing what it will do to your body.

#5 – Branded products are expensive

The latest greatest products are extremely expensive.  Some drugs can cost $1600 a month making it impossible for people without great insurance to afford the medications that may have less side effects.  Generic drugs don’t cost much at all and some have been shown to be as effective as the newer products.  If you take 3 or 4 prescriptions a month it gets a little pricey.

So these are my top 5 reasons why I don’t like psychiatric medications.  But here is the disclaimer – I still take them because I know without them I can’t live a good life.  They help my symptoms and make it possible for me to live a “normal” life.  Without the medications I don’t know what would happen to me and I am unwilling to take the risk to find out.  But there are a group of people who don’t believe in them, I am not one of them.  Suffering is not worth going without a medication that is going to make you feel better in the long term.  There are trade offs with everything in life.