The Truth About Mental Health in America

This post is hard to write.  No - not hard to write - most of it I wrote down a long time ago.  It's hard to share.  It's hard to share because of the stigma associated with mental illness, because of how difficult it is to be honest with myself and with the world... but those same things make it so very important to share.

On the heels of last week's horrific shooting at Sandy Hook Elementary School, people around the country and around the world are talking about gun control, and about mental health.  I won't pretend to be an expert on gun control or gun violence and I don't feel I have anything to add to that discourse that someone else can't state better - but on the topic of mental health, I can't be silent, because I do have a perspective that not everyone shares.

I want to be very clear about something.  I do believe that the Sandy Hook shooter, and anyone else who commits similar acts of violence, is mentally ill.  I believe that their actions alone make them mentally ill.  Anyone who thinks something like that is ever okay, who would ever perpetrate such horrors, has a very serious problem.  HOWEVER - I do not believe, and I hope that others do not believe, that all mental illness causes people to become violent or even unstable.  Thousands of people manage mental illness successfully every day - I am one of them.

Mental illness is like any other kind of illness - except that the research is so relatively new and the brain is so difficult to study that we know little about it.  Like cancer, it manifests in different ways.  Not everyone who has cancer has a brain tumor.  Not everyone who has a mental illness exhibits violence.  Like heart disease, it varies in severity.  Sometimes it can be managed with a few lifestyle changes - sometimes it is serious enough to require hospitalization.  People with mental illness, like people with diabetes or people with osteoporosis, live otherwise normal lives.

Sadly, mental illness is not treated the same as these and other medical conditions.  Because it is misunderstood, it is seen as something people need to 'get over', something to be feared, something hush-hush that no one wants to talk about.

This is not okay.

Go back to the hardest time in your life, the worst thing that has ever happened to you, and imagine if the entire world made you feel ashamed to express your feelings about it, judged you for having experienced it.  Imagine how that would magnify your struggle.  This is what people with mental illness face every day.

It's okay to throw "oh yeah, I take medication for diabetes" in conversation, but the room suddenly goes quiet if you admit "I take Prozac for depression".

It's time to change that status quo.  The stigma associated with mental illness is one of the most serious barriers to successfully treating it.  Who wants to go to their doctor and admit to suffering from a type of illness that is still largely considered socially taboo?  Who wants to have to explain therapy appointments to friends and coworkers?  What parent wants to admit that their child's mind is sick?

If it was socially unacceptable to have a mammogram, wouldn't breast cancer become deadlier?  If testing your blood sugar was something not to be done in public, wouldn't it compound the problems associated with diabetes?  So why, then, would we not expect the stigma associated with mental illness to change its impact on society?

This is the first thing that needs to change.  It is an attitude, and the only one who can change it is you.  The power is in your hands.

Now, here is where this gets difficult to share.  The second thing that needs to change is the actual treatment of mental illness.  I'm talking about doctors, hospitals, medications, laws, procedures.

Decades ago, the mentally ill were imprisoned along with violent criminals.  Any form of treatment was nonexistant and little or no differentiation was made between the mentally ill and those guilty of criminal activity.  Then a woman named Dorthea Dix, among others, witnessed this inhumane treatment, the suffering endured by the mentally ill at the hands of penal institutions, and a call for reform came about.  Dix is now famous, her name in history books, for her reform of the mental health system in America.

But as is often the case, change was slow to come.  If not imprison them, what could society do with the mentally ill, who were still so badly misunderstood?  Psychiatric institutions sprung up around the country - supposedly specialized hospitals that were intended to care for the mentally ill in a residential setting, removing them from prisons but providing them the day to day help they were perceived to need.  It was, in theory, an excellent plan.  But in practice, it was a flawed plan - a first step in a long process.  Because in order to be a 'specialized hospital' for the mentally ill, specialized knowledge of mental illness was necessary, and the research just wasn't there yet.

For decades, patients were treated with lobotomies, blood letting, organ removal, electroconvulsive therapy and hydrotherapy (which then was less like a class at the YMCA and more like torture).  "Insane Asylums" became places to be feared, places where not only were people imprisoned against their will, but they were subjected to inhumane "treatments" and the violence of other "patients".  Abuse and overcrowding became rampant.  Children with disabilities were abandoned to institutions, considered 'defective'.  America's mental health climate looked much like the orphan crisis in Eastern Europe, which I have shared often, does today.  You've seen those pictures.  Would you seek treatment if the answer was to be shut up in one of those institutions, where abuse, starvation, and filth are the norm?

So, as many Eastern European countries are currently trying to do, America went through the process of deinstitutionalization.  But what to replace it with?

By this time, research had come along a bit and doctors were realizing that mental illness could be successfully controlled, even treated, with medication and therapy.  Finding the right medications proved to be a delicate balancing act that the medical community is still figuring out.  What type of therapy was best is still a topic of debate.  But the days of cutting out body parts in hopes of getting the "bad" part were falling by the wayside.  Another step forward.  Insane asylums were renamed Psychiatric Institutions and then Mental Hospitals.  Later, psychiatric wards were added to mainstream hospitals as professionals sought to treat mental illness based on a medical model.

As people were treated successfully, they were often able to live on their own or with minor assistance, and the need for psychiatric institutions dissipated.  The doors of most of these places closed for the final time in the 1980's and 1990's.  Not so long ago, huh?  Some of you might remember, in the preceeding decades, that each county had a specialized hospital for the treatment of tuberculosis called a Sanitarium.  Where was the last Sanitarium you visited?  Our knowledge of TB and its treatment grew with leaps and bounds, and eventually patients were treated in mainstream hospitals, and today, many of them are medicated at home.  Still though, our local health department has a special department for managing tuberculosis.  The Sanitariums have disappeared, but the problem has not.

So why would we think that since the Insane Asylums have disappeared, that mental health problems no longer exist - or that they are somehow less deserving of our attention?  And yet, every year, funding is cut to mental health services at every level.  With few resources and little support, what is the medical community to do about the still existing - no, increasing - problem of mental illness?

If you don't personally struggle with mental illness or are not intimately involved in the care of someone who does, I bet you don't know.  I'm sure most of you have a cursory knowledge - psychologists, psychiatrists (quiz time - do you know the difference?), medications, suicide hotlines, school services, occasionally hospitalizations.  But what does that look like from the inside, and if the barbaric mental institutions of our country's past are gone, why do so many people still avoid seeking treatment?

The answer is simple, but horrifying.  The large scale use of 'insane asylums' may be gone, the terminology may have changed, but like the illness they were designed to treat, the abuses that occurred there have not gone anywhere.  It's simply not as visible as it once was.  You'd never know it, unless you'd been there yourself - and let's face it - once you're labeled with mental illness, who's going to believe you?  I'm sure we'd all like to think that society does not judge the validity of a person's word by whether or not they struggle with a certain issue, but it does.

How do I know?

I've been putting this part off because it's so difficult.

I've been there.

When I was fourteen, I was diagnosed with depression and panic attacks.  Doctors noted that some of my behavior exhibited a tendancy toward obsessive compulsive disorder.  I was treated with therapy alone for a few months, until I started high school and started having paralyzing panic attacks several times a day.  It was then that I began treatment with medication.

For the most part, my early experience with the mental health system was exemplary.  My therapist was excellent, understanding and kind and helped me work through a great deal.  The addition of medication to my treatment was successful and I got my life back.  For a while, I'd been unable to function, barely getting out of bed in the morning, not eating because panic attacks are hard on your digestive system, not accomplishing anything, coming home and crying for hours, afraid to be alone.  For most people, it's natural to want to ask 'Why' when someone makes an admission like this - but I cannot give you an answer to that question.  Why is a person diabetic?  Why does a young child who has never engaged in any risk behaviors develop cancer?  Answer for me these things, and I will tell you why a person struggles with mental illness.

So there it was.  I was treated successfully for many years.  Then, when I was 21 years old, I began to feel like the medication was not as effective as it once was.  My doctor and therapist agreed that it could be losing effectiveness since I'd been on it for so long.  The doctor decided to try a new medication.

I will not share the details due to their personal nature, but let it suffice to say that the new medication did not work for me.  In fact, I had what is called a paradoxical reaction, meaning that the medication made my depression and anxiety worse.  Though I have chosen not to go into detail in such a public arena, you can all rest assured that I was never 'psychotic' and I never hurt anyone or even wanted to.  I simply struggled with myself, as I had done before I was treated, only it was magnified by a medication with which my body chemistry was incompatible.

By the time this became clear, it was a Friday afternoon and I was unable to obtain treatment from my doctor's office.  I felt that it couldn't wait until Monday, I had already suffered long enough trying to give the medication 'time to take effect'.  I chose to seek treatment in the emergency department of a local hospital, which is the recommended course of action for anyone experiencing a psychiatric crisis when they cannot be seen by their regular doctors, whether they are violent/dangerous or not.  Again, I was not.  All I wanted was help.

My treatment was grossly mishandled by hospital personnel.  I spent an entire day in the emergency department while they called all the local hospitals with psychiatric departments to see if they had a bed, after I agreed to be admitted for treatment.  Having no prior experience with psychiatric hospitalization, my expectations of what to expect were very wrong.  I'd visited my best friend in the hospital when she was on chemotherapy.  She was in a room with a bed and a couch, checked periodically by doctors and nurses, given the medications she needed when she needed them, brought meals, and visited by family and friends day and night.  This is what I expected of modern day psychiatric treatment - after all, like most of the hospital's other patients, all I needed were medication and therapy.  This is why I agreed to be admitted.  Why I chose to seek treatment (and, up until that point, didn't understand why anyone would choose otherwise - why suffer?).

Unfortunately, I was very wrong.  By the time they found a location with a bed, it was after dinnertime.  They came to me and told me that the only bed was at a local psychiatric hospital.  I hadn't even known hospitals still existed with the sole purpose of treating psychiatric patients.  I was nervous, having already learned far too much about the history of mental institutions in this country, and I didn't want to go.  I asked if I could wait for a bed in the regular hospital's psychiatric ward.  I was told no.

This entire time, the patient in the alcove next to me, who seemed to be experiencing a more severe psychiatric crisis, shouted, swore, and eventually was restrained to her bed.  I was scared.  Would they do that to me?

I didn't want to make a fuss.  I didn't want them to treat me like that.  After a few tears, I willingly took the medication they gave me and waited to speak to a social worker about my concerns with going to the psychiatric hospital.  What I didn't know was that the medication they gave me was a powerful sedative, and by the time I saw the social worker, I was in no condition to refuse the admission.  I was transported via ambulance to the other hospital.  I was scared, but I still thought I was making the choice to do the right thing to help myself.

My mom followed me there in her car and sat with me while I signed papers, my head still foggy from medication.  Then, a woman prompted me to say goodbye to my mom - that she could come back the following day during visiting hours - and led me through a locked set of doors.  Red flags went up in my head - the short 'visiting hours' described, the locked doors to the rooms which my mom was not allowed to accompany down, the loud noise that echoed from beyond those doors - but in my sedated state I simply thought "I'll talk to someone about that later".  I was led to a room containing two twin beds, a desk, two dressers, a sink, and a heavily plated window.  A woman put sheets on one of the beds and told me to rest.  The loud noise from the hallway filtered in, but I was too tired to think.  I lay down and fell asleep, the last thought in my head 'whatever's going on, I'll work it out after I take a nap'.

I lost my chance.  Somewhere along the line, something in my paperwork was changed without my knowledge or consent, and instead of being there voluntarily (which everyone indicated that I was - and the fact that I'd walked into the hospital of my own volition and signed all those papers seemed to express), I was placed on a mandatory 72 hour hold.  But I didn't know.  I tried to give this place a shot.

I asked where the doctors were.  I was told that they were home, in bed.  It was Saturday night, didn't I know?

Wait.  Hospitals had doctors 24 hours a day.  What was going on here?

Where was my nurse, then?

I had to wait, she would see me later.

I waited hours to be met with a dismissive woman who had little power other than to get me a cup of juice and a sandwich "because you missed dinner".

I couldn't sleep.  It was noisy.  Other patients were milling around the hallways in various states of dress, visiting each other's rooms.  A loud television blared in a common room filled with hard plastic molded chairs.  There were no clocks.  There were no mirrors.  Most personal effects were 'locked up' upon admission.  There were no visitors... only harried nurses in blue and grouchy orderlies in green scrubs who barked orders with a strange accent.

A scuffle occurred in the hallway.  One woman who seemed to suffer from some type of developmental disability was wailing in the next room.  An old black man in a hospital gown wandered around grumbling, occasionally stopping to shout expletives.  I didn't belong here.  I tried, I gave this place a shot, but there had to have been a mistake.  I wanted to go home.  I asked to leave.

No.  You can't go home.  You are on a mandatory hold.  We will talk to someone tomorrow, maybe then.  Over and over I was lied to.  You can go home after you talk to the director.  You can go home if the doctor releases you.  You can go home on Monday, then your three days will be up.  Nevermind, only court days count.  We don't know when you can go home.

Why am I on a mandatory hold?  There must be a mistake.  How can I clear this up?

Someone will be in to talk to you.  We'll discuss this in the morning.  The doctors will be back on Monday.

Out of sheer naivety, I believed them.  Only a little longer.  If I could just get through the night.  Then - it's only one more day, you can do it.  Then Monday came, and I was up early waiting for the doctor.  I tried to choke down some powdered eggs in the cafeteria.  One woman, who'd seemed relatively normal to me up to that point, dumped hot coffee in the lap of the old black man, who'd taken to shouting "KILL THE WHITE BITCHES!" at random intervals.  Two nurses called in sick.  One nurse was assigned to guard the perpetrator of the coffee incident one on one.  This left one more nurse.  There were at least twenty of us, male and female, ages 18 to 65.

After breakfast I waited in the hallway.  I didn't want to miss the doctor.  Where was she, I asked the passing nurse?

It's only 10 AM, she's not here yet.

Only 10 AM?  So much for doctors working crazy hours.  10 AM on a Monday and the rest of America was at work... but not the only doctor who could see me at the hospital.

The developmentally disabled woman scratched the nurse.  The nurse scratched her back.  She screamed and bit the nurse.  The nurse retrieved her partner and forcibly gave the woman a shower.  She screamed the entire time.

Finally, as I sat in my room alone, an older woman came in.  The doctor.  A psychiatrist.

I tried to explain the mistake to her, like the director had told me, so I could go home.  It was Monday.  All I needed was her clearance.

She told me that I could not go home and she wanted to change my medication.  I started to cry at the thought of another day at this place.  She took this as a refusal to comply with her medication suggestion and made to leave the room.  Sobbing, I called for her to wait and agreed to the medication, thinking that at least if I was cooperative, I'd go home sooner.  I was given no information with which to make this decision.  I didn't care.

She left.  A nurse brought my medication.  I vied for the one phone in the ward, trying to get a chance to call my own therapist, my own doctor, to help clear up this mistake.  Apparently everyone wanted the phone.  Someone tried to hide it in their room and it was confiscated before I got a call back from anyone.

I was given a roommate.  A girl my age, maybe a little younger, who told me she was schizophrenic and this was her third time being hospitalized, but that she had never been to this place before.  She was nice enough.

An orderly called us all together in one of the common rooms and handed out papers.  It was like the first week of home economics.  "Say one thing about yourself.  Change the following statements to "I-statements" statements - for example, instead of "Christina, you always tell me what to do!", how about "Christina, I feel (frustrrated) when you (tell me what to do)"?"  The doctor was not there.  The nurses were still with the coffee girl and the developmentally delayed girl.  The orderlies ran the "therapy" session.  The angry young white man who'd walked around all night with a boombox blaring, demanding painkillers, shared his "I statement".  He said, "(Other patient), I feel pissed off when you are such a bitch."  Laughter.  An elderly black woman clued me in that she was making sexual advances toward a new patient because he had smuggled in some marijuana.  (As a side note - these seemingly judgmental or gender/race descriptions are here only because everything was based on perception and a person's willingness to share details about themselves.  The names I knew, I am choosing not to share for the privacy of those involved.)

My parents came that morning to try to get me out.  They met with the director and the doctor.  The doctor told them lies about me and refused to release me.  When my parents became angry and threatened not to leave without me, they were told that if I left the facility, the police would be called to bring me back.  I got into trouble for trying to signal to them out the window as they left - just to ask if they were coming back later for visiting hours.  I was so scared, I thought the orderly was going to hit me.  I was left staring out the window crying as my parents drove away.

After lunch, I settled in my room to chat with my roommate.  We were talking quite amicably about Buddhism.  The orderly with the strange accent came in to yell at us for not being more social, and told us that we would never get out if we weren't more social.  The girl and I looked sideways at each other, as if to say, 'Who, exactly, are we to be social with?  The man shouting obscenities, or the girl throwing coffee?'.

Then an alarm sounded.  I didn't know what to do.  What kind of alarm was it?  Fire alarm, it turned out.  But what to do?  The doors were locked.  We were herded into a hallway to wait while someone fetched a key.  Then we were led out to an enclosure fenced in with tall barbed wire, at the greatest distance maybe three yards from the building.  My roommate and I watched as young children were herded into a similar enclosure.  My heart broke as I realized that these little kids were in the same prison I was.  Then one of them, a boy maybe 7 or 8 years old, gestured as though he was shooting us with an automatic weapon.  "Tch-tch-tch-tch-tch-tch-tch", he went.  Later, I asked the nurse how young the children were.  She told me they were as young as five.

In the evening, after visiting hours (the one time I got actual food to eat - my family brought it to me.  Let me just say this - powdered eggs are an abomination that should not exist.) the grouchy man in green ordered us all up against a wall.  Apparently, since they were short handed and hadn't been supervising visitation, someone had been trying to smuggle in cigarettes.  They made to search us until the perpetrator came forward, then they let us go reluctantly.  Again, I was scared.  But later, I was sorry they hadn't searched us, because the angry man with the stereo was whipping out a lighter to show off.

I couldn't sleep again.  I had a sinus infection and asked for some benedryl or robitussin for my cough and sleep.  I was given an unidentified pill 'for sleep' - and at that point, I cared so little what happened to me, I took it without question.  Apparently I slept through another episode with the developmentally disabled woman next door, until a woman came and pulled me out of my room.  A doctor, but a different one from the day before, and she seemed to listen to me more and did not lie or make false promises about when I was getting out to coerce me into submission.  She changed my medication again, but with an explanation this time.  Then she told me that if she, a social worker, and the director all agreed, I could go home that day, or maybe the next day.  I hesitated to believe her, and I hadn't seen a social worker in three days, so I wasn't sure when that was going to happen.  Later, other patients (who weren't violent or frightening enough to be noticed) told me they'd been there over a week and still not seen a doctor.

After breakfast, a nurse brought a young black girl into the ward.  She introduced herself to me and told me that she was there because she had run away from her foster home, that she'd been there a week, but today was her 18th birthday, so she'd just been transferred from the juvenile ward.  As we talked, the old black man in the hospital gown ambled down the hallway and sat on the ground near us, his hospital gown coming open and revealing that there was nothing underneath.  Yeah, there are things I just didn't ever need to see.  We went into the new girl's room to talk.  I asked her why she still had to be here if she was 18, so she should've aged out of the foster care system.  She told me that she was awaiting a competency hearing to decide if the state could keep her in their custody longer.  She told me about abuses she'd witnessed in the juvenile ward.  She told me the only way it was better there was that she felt safer because she was the oldest.  She and I were both intimidated by the residents of the adult ward - and I felt for her that her 'birthday gift' was this demotion.  At lunch, I sat with her, my roommate, and the elderly black woman.  We tried to ignore the fight that broke out right under the noses of the staff as the meal ended.  And by under their noses, I mean they watched.  Laughed.

I did manage to speak to the social worker after lunch, and she saw no reason to keep me there.  I was told that I would be discharged as soon as my papers were in order.  This took hours, but I got to go home after dinner on Tuesday.  Finally.  And the only way I was better than when I came in, was that I had a newfound sense of appreciation for my freedom.  I remember telling my mom "If you weren't crazy when you went in that place, you will be by the time they let you out."

The medication they put me on turned out to make me physically ill and prone to crying jags.  This time, I avoided seeking help.  Seeking help is what got me locked up like a criminal, or an animal in a cage.  I suffered for nearly two weeks before I saw a new doctor who finally straightened out my medication.  By the time I was back to normal, my life had been near completely derailed for almost a month.

I realize that my description of my experiences is long and contains what seem like insignificant details, but I shared it this way because I want you as a reader to understand as much as possible about the experience of actually being there, without having to go through it yourself.  I wouldn't honestly wish that place on anyone.  My point here is that I sought treatment - did the right thing - and for my trouble I was locked away like a criminal in a place that made me fear for my safety and where I witnessed abuse and gross medical neglect.  I told my therapist later (who was disgusted by every detail) that it was as though I'd walked into a scene from 'One Flew Over The Cuckoo's Nest'.  I filed a complaint with the state board of medicine.  I called two news stations, both of whom told me they'd been contacted about that hospital before, even about a rape that occurred a year before I was there, and were unable to report on the conditions because it was a closed facility - meaning the only way in is to be admitted.

I can honestly tell you that if I were to experience a psychiatric crisis in the future, the hospital would be the last place I'd go.  It's easy to say 'seek treatment' if you've never had to do it yourself.  It's easy to expect people to give up their freedom, subject themselves to the unknown, if you haven't seen these things for yourself.  It's easy to think that the days of abuse of psychiatric patients passed along with the 'insane asylums' (which, incidentally, were mostly just relocated and renamed and kept hush-hush.) when you haven't been personally faced with that abuse.  How can we ask people who are struggling to seek treatment, if this is what they can expect when they do?

If we, as a country, as a people, want to fix the mental health system in this country, we must first recognize all the ways in which it is broken.  Abuse.  Neglect.  Misunderstanding of medical conditions.  Coercion.  Judgment.  Fear.  Stigma.  Lies.  Do not fool yourselves into thinking these are things of the past, or things that happen 'somewhere else'.  They happen here.  In your own back yard.  To your own friends and family members, who, for the most part, are too ashamed to ever speak up.  And even when they do, no one believes them, or no one is willing to take 'meaningful action' (in the words of the President).  This place I was imprisoned?  It's less than two miles from my house.  I never even knew it existed.  When I got out I was overwhelmed for a while with guilt for the people still there, the people who had suffered along with me, who might not have had the resources to get themselves out of the clutches of the system and on to better treatment.  As I write this, there are still people in that place, no doubt suffering the same way.

I don't have the answer to the mental health crisis in this country - only my personal experience, which has told me what the answer is not.  And the answer is not caging up people who seek help like animals and mistreating them.  If we want things to change, this has to end - now.  I urge all of you to support mental healthcare reform, to be a voice for the voiceless in these institutions in our own back yards, and not to tolerate the culture of exploitation and abuse of the mentally ill that grips our society despite reform attempts reaching all the way back to Dorthea Dix.  Be the face of change.  Take meaningful action.  Don't wait for someone else to do it.  It's up to us.

I left twenty people in that ward.  I promised some of them that I would tell the world the truth.  I promised them that I would try to help them.  This is me trying to make good on that promise.  I'm sorry that it took a tragedy like Friday's shooting to encourage me to speak out above the stigma.