The Manifesto of a Noncompliant Mental Patient

Aubrey Ellen Shomo
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I see it everywhere: People with mental illness need medication.  It sounds reasonable.

Today, there are even political organizations that seek to make it easy to force a person to take it.

It’s easy to look at another and assume things like that.  It’s human.  After all, it’s compassionate to help someone who isn’t able to ask for help, right?  They’ll thank you in the long run, won’t they?

No one asks why their child, or sibling or friend refuses to take their meds.  Why bother?  It’s an illness.  It’s meaningless.  The doctors say so.  They know these things.

Have you ever questioned the logic of the phrase “She wouldn’t be refusing medication if she wasn’t ill”?

I am a noncompliant mental patient.  I have been for years.  I beg you.  Ask why.

Look into my eyes and see me.  Try to understand where I’m coming from.  Even a crazy person has a human will.

I am someone’s sibling, someone’s child, and someone’s friend.  I could be yours.

I’ve been told more times than I can count that I won’t make it without medication.  I’ve been told that I have a chemical imbalance.  My brain’s broken.  I need it.

If I refuse, it’s the side effects.  They can treat them with more medication.  If it isn’t that I lack insight.  I don’t know I’m sick.

Why would I possibly want to stop?  How could I wish to do so?  Let me ask you:  Have you ever taken these drugs?

They call it anti-psychotic medication.  It sounds good enough, but did you know these drugs are also called major tranquilizers?

They speak of side effects, but do you know what it feels like to have them?  Can you read that on the label?  On my label?

What’s that?  You learned all about this in medical school?

Can you learn what it is to be in love from reading a medical description?  Heart rate, neurotransmitters, behavior patterns.  Three criteria out of five.

Can human experience be described in such simple terms?  I bet you don’t think yours can.  Why, then, do you insist on describing mine?

I know how major tranquilizers feel.  I’ve had to.

They change a person.  The vigor of human experience fades to shades of gray.  Life becomes dull, boring, long.  Creativity slips into nothingness.  The very human spirit is dulled.  You can go from the rapture of being alive to wondering if you even are.

They will make you calm.  They will make you behave.  They might even help with your problems, but they can dampen what really matters – what makes you alive.

They majorly tranquilize.

“She prefers her mania – her madness.  It’s a symptom of the disease.”

How can you say what matters to me?  Is that your right?

For this broken mind of mine, I have been locked up.  I have been threatened.  I have been restrained.  I have suffered at the hands of a system I’m told is helping me.

And they wonder why I don’t trust them. How could I be hesitant, even bitter?

“She’s paranoid.  She won’t take her medication.”

They might be right, but all I ever wanted is to make my own choices.  I’ve only wanted to scream, “What about how I feel?!”

I am a noncompliant mental patient.  Hear my voice.

A cancer patient can refuse chemotherapy.  A religious person can choose to trust God over penicillin.  A doctor would call both irrational, but acquiesce.  All I ask is the same right.

“She’ll decompensate without it.  It’s the only thing keeping her even remotely sane.”

I stopped all my medication twice.  I was hoping once would be enough.

The first time, I failed.  I lost it.  They were right: I went crazy.  I was strongly encouraged to take my meds.  It was a fight I knew I would not win.

“Patient has been compliant – though hostile.”

A façade of normalcy regained.  High functioning.  Working, going to school, socializing.  All the things you’re supposed to do.  All so hollow.  The spark was gone.

“The medication is effective.”

But the drugs felt the same.  So, I stopped again.  Lots of people do.

“Compliance is a major problem in the treatment of mental illness.”

I was told that I’d need medication forever.  The facts spoke clearly.  I was mentally ill.  As long as I took my medication, I would be fine.  Without it, I was doomed.  Why did I want to stop?

I told them how it feels, but it didn’t matter.  I told them I would recover through force of will alone.

“Patient is grandiose.”

So, I told them I didn’t believe I was sick.

“Patient lacks insight.”

In truth I was terrified.  I believed I was insane, I had failed before, and I wasn’t sure I could pull it off on my own.  After all, the facts were clear – no one does.

But I did.

Later I learned that many have.  No one talks about them.

John Nash never took medication again – it was key in his recovery.  They left that out of the movie.

There are many others who were told no one recovers – told that they would be ill forever – but who proved them wrong.

I am a noncompliant mental patient, yet no one would try to hand me a pill today.

To get here, I had to ignore good medical advice.  I had to have poor insight and bad judgment.  Without it, I would never have achieved what I have in life.

So, now when I hear about family members who should have made sure their relatives were taking the medication, or courts that should have forced it, I think to myself about doctors who should have listened.

I often think about people who may have succeeded in stopping their medication, if only they had the necessary support instead of assurances of failure.  I wonder how many more I should be able to name.

I wonder why so few people speak of the validity of the desire to not be medicated.  Even a crazy person has a human will.

ABOUT THE AUTHOR:

Diagnosed with a psychotic disorder at eight years old, transgendered essayist Aubrey Ellen Shomo (born Justin Michael Shomo) would spend most of the next decade on neuroleptic medication – over her vocal objections – and would be hospitalized repeatedly.  Upon reaching adulthood, furious with the treatment she received for so long and her own powerlessness in the face of it, she became a psychiatric survivor activist.

Over the course of the next decade she would be honored as a semi-finalist in the international Film Your Issue competition for young filmmakers for a PSA about child abuse in psychiatric hospitals, serve on the board of Colorado’s statewide consumer network, speak at the national Alternatives conference and serve on its advisory committee, and tell her story, most recently for the National Coalition for Mental Health Recovery’s CD series Voices of Hope and Recovery: Our Stories, Our Lives.

Apart from her work as a psychiatric survivor activist, she works in the real world as a Network Engineer and Programmer and has published in 2600: The Hacker Quarterly and Transgender Tapestry.  Her website can be found at 

COPYRIGHT AND REPRINTS:

This work is Copyright © 2006 Aubrey Ellen Shomo. It was first published in the Spring 2007 issue of Open Minds Quarterly. It may be reproduced, copied, or reprinted in any medium now existing or invented in the future, so long as it is reproduced in its entirety, including this copyright statement, and so long as it bears attribution to the author, Aubrey Ellen Shomo. Spread it to the wind.

PUBLICATION HISTORY:

This essay was first published in Open Minds Quarterly, Spring 2007 Issue (Volume IX, Issue I), and reprinted in the book Perspectives on Diseases and Disorders: Schizophrenia (Greenhaven Press, 2010).  Forthcoming in the book In New Light: The many paths of identity, struggle & mental illness (Expected Summer 2012), and in Our Voice / Notre Voix, Winter 2012 Issue (No. 56).

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19 COMMENTS

  1. thank you for this. for almost 20 years i have been threatened with and called noncompliant for not wanting to take medications (cocktail including anti-psychotic, anti-anxiety,anti-depressant, etc.) and asked “don’t you want to get well?” (i felt that i had to prove that i did want to get well, i was a “good girl”) when i wanted to stop the meds that didn’t even help me, other than to make me like a zombie. they stole so much from me. i am finally withdrawing from the last ones this year. it helps to not feel alone in this. i am finally listening to myself about what i need and it helps to see that it worked for you and that i imagine you can understand my anger and sadness around this. this is a beautiful piece.

  2. This is a beautiful piece.
    I found out that once you are labeled, no matter what you do to fight it, “they” see you as crazy, delusional, paranoid.
    Then they trade diagnostic labels according to your response. First I was schizophrenic, then after all the brain disabling treatments, I was very passive.

    I got angry after two days on Paxil (slammed a book on a table) they decided I was Bipolar. Apparently getting angry is a symptom of “mania”, not a side effect of Paxil.

    Now I know, go along with them, make them think you’re “all better” then run the other direction– fast!

    Don’t get caught up in their psychiatric money-driven machine.

    They have ruined my life in so many ways.

    Someone told me, “You aren’t crazy, you’re a Pisces”. I try to hold onto that.

  3. Good piece, I can relate to.

    On reading my hospital file after two weeks involuntary hospitalization, it was interesting to read that prior to them starting me on medication (remeron) every day they reported I was “depressed”…after they started giving me the medication the notes changed to “patients’ mood is much improved…patient is reacting well to medication…patient is feeling better each day because of medication…patients’ insight is improving” etc etc etc…

    One minor flaw in their analysis – I wasn’t taking it…

    🙂

  4. Hurrah for you! I was one of those parents who thought I needed to ‘save” my son, who was an adult, who does not believe he is anything but normal. I have finally realized he is normal to himself and that is all that matters. I love him just as he is. I dropped NAMI membership and want to be part of the movement to end mental health madness in this country.

  5. I was abused in under the Barnsley Mental Health System, they give me 250mg of clopiximol a week, fat too much to fight them off, still fighting though, keep up the good work, to see these kinds of manefestos in print gives us some clarity and mental strength to try using words against them; preferably in court!

  6. i know what you all are going through….. I was in that situation myself with a hoard of doctors parents friends nurses carers telling me to take medication…. Well believe me I can be assertive… i recently found out i have hypothyroidism and my brain is just starved of thyroid hormones…. I can argue!!! I am going to bring them DOWN!!!!!!!!!

  7. There is a flip side to being non-compliant.

    Yes, I understand that the side effects of the medication are unpleasant (and yes, I have tried antipsychotics myself, as they are used off-label for anxiety).

    My extended family has been dealing with a psychotic sister for 25 years. Her most recent psychotic event has wreaked havoc. My well sister made safety visit after safety visit to ensure that she was OK, each requiring a day’s drive. She was acting so weird and nasty that she alienated her sister, as well as her friends.

    At its peak, the police were called, after she caused significant property damage that could have killed her and others. Since then, my sister and I have worked full-time taking care of her and cleaning up the mess she left behind when she decided that her previous diagnosis was wrong and stopped all medication. We have dealt with the police and the victims of the property damage she caused, stopped her from getting a police record, and from going to jail.

    We’ve dealt with insurance companies to help pay for the property damage. We’ve dealt with hospital personnel, social workers, attorneys, NAMI, psychiatrists and every other resource imaginable.

    Our aging parents had to get involved, and they are having their own health and cognitive problems.

    I’m struggling financially after three months with no income. Both my well sister, me and her husband have injured ourselves because we’ve gotten out of shape from the time commitment. And we’ve neglected our own families.

    At the same time, our ill sister has expected us to care for her and clean up her actions, allow her to live in our homes and provide for her needs, while at the same time holding back information (such as insurance company information, credit card information so we could pay off her bills, access to healthcare providers so we could tell her providers about her behavior) that we needed to clean up her mess.

    You do have the legal right to not be medicated.

    If you can manage without medication, good for you. That means that you have to be fully capable of self-care.

    Most with serious mental illnesses aren’t capable of self-care without medication.

    If your becoming non-compliant means that a team of people have to halt their lives to manage you and the disaster you left behind because you decide to become non-compliant, you’re really acting in a selfish way.

    Expect whatever consequences come your way if you do this – you could die or wind up in jail (in the midst of this, I saw an article on someone sentenced to life in prison for a murder committed after he went off his medication; our legal system generally has little tolerance for the mentally ill when they commit a crime, unfortunately).