Getting off the bipolar rollercoaster!

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I was having a conversation with a mental health care professional.  We were discussing the need to treat bipolar disorder.  The conversation was inspired by a young man I met who had his first episode of bipolar disorder.  I’ll call him Matt.

After he was released from the hospital Matt came to talk with me at his mother’s request.  He told me about smoking a lot of marijuana with high THC levels.  And I replied, “Not sure if you know this but it can cause psychosis in people who are at risk for mental illness.”  He answered, “Yeah.  I know.  They told me that at the hospital.”

We continued our discussion and it was clear to me after three weeks in the hospital Matt was still not stable.  He admitted to “cheeking” his medications.  The hospital than begin to give him injections.

So, as I was discussing with the psychologist about what happens to people with bipolar disorder who have had psychotic episodes and don’t stay with a treatment plan, I said, “Matt is headed down a bad pathway, if he doesn’t stay with his treatment.”  The psychologist looked at me and said, “None of us have a crystal ball Amy.”

Well…I wouldn’t claim to be clairvoyant but I am rather intuitive.  More importantly I have seen my family members struggle without the proper treatment (my sister had over 40 hospitalizations), I personally have had my own challenges and every single person who I have met with bipolar disorder road a rollercoaster until they got the proper treatment.

I had another experience just a few short weeks ago with a person who I helped get to the hospital.  She was released long before she was stable.  I was livid.  She is now a missing person.  Her brother said to me, “I can see how people become homeless.”

I’m not intending for this to be a downer blog post.  There is a lot of hope when it comes to mental illness and bipolar disorder.  I live a meaningful, productive life.  But I also have been on that rollercoaster ride.  Even if I’m not a psychic, I know with 99% accuracy, if you don’t take bipolar disorder seriously, it will destroy your life and will impact the lives of everyone in it.

The mental health care system is terribly broken.  And mental health care professionals must start educating people about their conditions, including the possibilities of what can happen if the proper treatment plan is not in place.

I see two doors.  Door number one is not taking medication and staying on a high-low rollercoaster that wrecks havoc and keeps us sick.  Door number two is difficult.  But we learn everything we can and keep learning about wellness strategies, how to recognize symptoms, how to deal with depressive episodes, how to keep fighting.  It’s not an easy peaceful path.  But door number two…is the audience choice on Let’s Make a Deal.

We can’t allow our frustrations with something we deal with on a daily basis to keep us from persevering.  If you live with bipolar disorder, you must learn as much as you can about this illness.  It is manageable, treatable and you can learn to live with it.  Doesn’t mean it’s going to be easy.  But as with other illnesses a person who has it must take responsibility.

None of us bought the ticket for the rollercoaster ride bipolar disorder takes us on.  But when you can get off the ride, life gets a whole lot better.

A story of bipolar disorder and courage

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It takes courage to pick yourself up after any kind of loss or hardship.  But the kind of courage I’ve seen from my friend, Hunter has been filled with real live parallels and life lessons.  Hunter is a 27 year old who has bipolar disorder.  And he is currently staying in a state mental hospital as a result of a psychotic episode.

Hunter is a brilliant young man who had his first psychotic episode while he was in college at the University of Colorado.  He was quickly diagnosed with bipolar disorder, but like me and many other people, he didn’t realize how serious one must get about learning how to manage the condition.

From the time of his first episode about four years passed.  He struggled with inpatient hospital stays and never really got stabilized.  After a manic and psychotic episode Hunter had the misfortune of being arrested and charged for running into people in the drive through lane at a McDonalds.  He wasn’t thinking clearly, got scared and ran into the car in front and the car behind him.  No one was hurt.

But…

Hunter was thrust into the criminal justice system.  After nearly two years in jail his case finally made it into court.  He pled not guilty by reason of insanity and was sent to Patton State Hospital in California.  A year has already passed since he has been there.

Even though he has been through so much and doesn’t really know when he will be released, he maintains a positive attitude.  Yesterday he talked about the possibility of him getting a job in the hospital and perhaps taking a class.  Some days he finds it difficult to get out of bed and go to his video class.  He struggles with coming to terms with why he didn’t get the help he needed.  He wants to release his emotions, but he’s just been through so much it’s very difficult.

Although I haven’t been institutionalized for more than three weeks, I can relate to Hunter.  It wasn’t that many years ago that I struggled to get out of bed.  The grief process I went through over the losses I experienced was intensely consuming.  And sometimes the loss of my very promising business career and lifestyle that matched haunts me.  But it also gives me the wisdom to share in real time with Hunter authentic emotions.  It gives me the ability to simply say, “I understand.”

Experiences and stories don’t have to be the same to touch upon a deep level of compassion that exists for one another.  There is no one with bipolar disorder who has not struggled.  It’s a very difficult illness to manage.  Some people deal with it by harnessing the positive extra energy one can have while hypomanic.  Others try to make sense of their psychosis experiences.  Some people paint it as a gift.  Personally, I choose to call it a worthy opponent.  Something I must continually work at to beat.

Those of us who live with bipolar disorder all have one thing in common:  we all have the courage to get out of bed in the morning.  It gives us the ability to face the fear of experiencing sometimes disabling symptoms.  It challenges us to remake our lives and deal with disappointments.

It takes courage to not give up trying, even though it may be hard to keep on going.  Hunter is one of the most courageous people I know and one of the most important people in my life.  He encourages me, inspires me and fuels my passion for mental health advocacy.  He is my example of a person who forges ahead even though he doesn’t know what the future may hold.

I hope I can do the same thing.

“Courage is being scared to death…and saddling up anyway.”  ~John Wayne

 

 

 

 

 

 

 

 

 

 

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

A little bit of hope

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I have been blessed the past three weeks to travel around the state of West Virginia and speak about mental health to college students.  One campus had a young man who had died by suicide a few months ago.  He had been a member of one of the sports teams and suddenly quit.  He began isolating himself and stopped hanging out with friends.  Those things he did are warning signs of suicide.  But people around him didn’t know those signs.  Now they do.

Another campus had a young woman who died by suicide.  She had a diagnosed, serious mental illness.  I believe all family members who have loved ones who live with mental illness should be trained in mental health first aid.  They should know the warning signs of suicide.  Before it’s too late.

I go to college campuses to shed light on mental illness.  I want people to know there is help and there is hope.  Sometimes I get to hear the stories that inspire me and keep me fired up about spreading this message.

I had a college athlete approach me and say, “Ahh…I kinda struggle with this stuff.”  I smiled.  He knew I understood him.  It didn’t take a lot of words to hear the emotional pain in his voice.  His struggle is depression and often times that means a battle with suicidal thoughts.  When he shook my hand and said, “Thank you for sharing your story.”  It was a gift to me that in some small way I spread a little bit of hope.

Then, a few days ago I received an email from a man who had experienced a lot of tradgedy in his life.  He was overwhelmed with grief, depression and was self-medicating with alcohol.  He told me, “Thank you for what you do.  You just might have saved my life.”

I didn’t respond to his email right away.  I was overwhelmed with the responsibility of my work.  On some level I knew how important educating people about mental illness and suicide is.  But on a deeper level grasping the fact that your work can help save someone’s life takes every word I say when I give these talks to a hire level.  But the work is not about me.  It’s about reaching people of all ages, one person at a time, and allowing the gifts, talents and skills I have been blessed with to help other people.

As I’ve become more visible, I’ve received some healthy feedback, mostly positive.  But there are people out there who don’t understand why I would do this work.  Why I would write a book that would highlight some of the most difficult experiences in my life.  I did it and I would do it again.  Because sometimes all some folks need to hear is “you’re not alone in this fight.”

Turns out–a little bit of hope saves lives.  I’m humbled by this work.  I’m honored for this calling.

 

 

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.

 

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.

 

Time to Talk Mental Illness

It’s hard to believe it is 2017!  I am not sure where the time has gone, but I do know after all these years of living with the stigma of mental illness it is for sure past time we talk about it.  There are so many anti-stigma efforts and I do feel like we are moving the needle some, but it is not enough.  And from my perspective it is not happening fast, it is a slow drip-drip-drip.

I never thought I would have to live with some illness called bipolar disorder that many people really did not understand and if you said you had a manic episode they really would not know what you meant.  Really I wasn’t sure what it meant for many years, until I studied it so much so I could manage it.  In reality, everyone with bipolar disorder experiences it a little bit differently.  Clusters of symptoms may be the same, but how we behave and handle our illnesses are generally not a carbon copy of it.

We have to talk about mental illness because quite frankly it is so complicated it is hard to understand.  Some illnesses are easier than others but I would argue for even the people who have anxiety disorders they will find not everyone understands how debilitating that can be.  Many people believe you should just be able to take a pill and “get over it.”

With 1 in 5 Americans living with a mental illness that equates to about 20% of the populations.  Yes, there are far less of us who have severe mental illness like bipolar disorder, major depression and schizophrenia, but we still represent million of people.  This really means that everyone knows someone who has a mental illness…and if you think you don’t it is probably simply because they don’t talk about it.

I want you to ask yourself the question, “If I found out my best friend had been struggling with severe depression for years, would that change how I felt about them?”  What about if you found out your sister had been struggling with postpartum depression with psychotic features would you know what that meant?     How about your boss at work who seems to have major mood swings between being very gregarious and not talking at all.  What do you say?  What do you do?

If we don’t talk about mental illness we will continue to find ourselves in these socially awkward situations where we don’t know how to react or what to say.  Granted it is not as bad as it used to be, but it could be a lot better.

Of course I don’t believe everyone should write a blog or a book about their struggles with mental illness.  But I do believe people should not have to be afraid to tell others they are struggling with a mental illness.  It is truly a shame to have to keep something a secret that occupies a great deal of time and effort.  Managing a chronic mental illness is a HUGE effort.  There are doctor and therapy appointments, medication side effects to deal with, prescriptions to refill, and symptoms to deal with.  It is at times a very hard road to journey on.

My one wish is that other people could feel more free to talk about it so there will be a greater understanding.  Maybe then those who live with mental illness will feel more supported.  Maybe then there will be more research dollars to help fund better treatments with higher efficacy.  Maybe then there will be better access to care.  Maybe then people with mental illness won’t be housed in jails and prisons.  Maybe then our society will be more compassionate.  Maybe….just maybe people won’t have to suffer in isolation.

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.

 

7 Things I learned at the psych ward

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Does the title of this blog scare you?  Does it make you laugh?  Does it make you cry?  Make you shudder?  It might do one or all of those things.  Most people NEVER want to admit they have been to a psychiatric hospital.  I can’t say I would have ever dreamed I would be talking about this out loud.  But the path between me and a psych ward is pretty long ago and I feel like there is something to be learned from every experience.  And as a mental health advocate I believe we should never be ashamed from getting the help we need.  In this spirit I share…

Here are seven things I learned at the psych ward:

#1)  It is NO fun to be LOCKED up

My first trip for inpatient care was 17 years ago and I was terrified when the door locked behind me.  I understand the door is locked for patients and public safety, but it does not discount my feelings of fear.  It reminded me of all the bad things I had ever heard about mental institutions.  Yes, even though I might not have been in my best frame of mind I still had thoughts and feelings.  There are places that do not lock the door, but those are few and far between.  No sugar coating.  Being locked away was a degrading feeling.

#2)  Most people there are “normal”

What is normal anyway?  Well, that’s your average everyday person who has goals, dreams and a life outside of the hospital door.  People from all walks of life visit the psych ward every single day.  They are just normal people – husbands, wives, daughters, sons – they just happen to be struggling with an illness.

#3)  The staff is a reflection of society (stigma exists)

There are good people, bad people and somewhere in between who work in the psych ward.  I have been treated extremely well by many people, but I have also been discounted, discouraged and disenchanted.  Some staff are very knowledgeable and willing to teach about a specific illness and others can’t wait until their shift ends.  Just a reflection of society.

#4)  You don’t recover in the hospital

Think about being hospitalized for any physical illness.  A person who has had open heart surgery is not going to get well over night in the hospital.  We are a quick fix culture, especially when it comes to mental illness.  But it takes time and effort to fully recover.

#5)  Some people are more sick than others

Mental illness is on a continuum.  Every disease has common signs and symptoms but will manifest differently in each person.  Some people will never get well and probably need to be in a hospital for continuous care.  But most people can get better.

#6)  Some places are better than others

I have been in a hospital that had a swimming pool and basketball court, but that’s the exception.  I have also been to a place that did not have enough chairs for everyone to sit. The most important thing is that a person gets the right kind of care that they need and clearly some places do provide it and others do not.

#7)  They don’t want to keep you there

Contrary to popular belief psych wards do not want to keep people there.  One of the biggest issues we have in America is the poor mental health treatment that is available.  It is often poor because people who need treatment can’t get treatment and if people get treatment they don’t keep people long enough – the average inpatient stay in the United States is 7.2 days.  For some illnesses that is not long enough.

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.