The Proof is in the Pudding

By E. Daisy Anderson

I am about to tell you a story you may not want to hear.

It is what happened to me during my career as a psychiatric patient.

-It is very emotional

-It is full of injustices

-Incompetent medical care

-Frank violence

Telling my story is not easy because it brings up pain and anger.

This story may be difficult for you to hear.

It is about a PUBLIC HEALTH CRISIS that we do not want to face. Much like family violence 20 years ago WE ARE TURNING A BLIND EYE TO THE REAL PAIN OUR PSYCHIATRIC CARE IS INFLICTING ON VULNERABLE PEOPLE.

You may have a loved one with a similar story. This story happens all the time.

I do not believe in giving a doom story and walking away. I will offer my idea of the solutions.

Who Am I?

My name is Eliza Daisy Anderson. I am

  • intelligent
  • caring
  • passionate about what I do
  • physically healthy
  • socially alive
  • I am a HUMAN BEING living IN CANADA.

I am not so unusual. This is how I am now. But not so for almost 40years.

How bad was I? How sick? You be the judge.

The mental health center’s story:

Several years ago they had meetings to discuss how to get me into a psychiatric facility.

I was calling the crisis line daily, or more, demanding they help me. My words: “You better produce”were harsh; I was in and out of the psych ward.

I was a nuisance. I was taking too much time and costing too much money.

My story:

I had two solvable problems:

  1. Both my parents had recently died. I found out by accident. I was far too ill to attend their funerals. I was distraught and hurting.
  2. My medications were making me sick. I had withdrawal every afternoon when the effects of the pills wore off before the next dose at bedtime.

I was weak, depressed and agitated and when I called the crisis nurse I

heard: “Take another Ativan, dear”.

Here I am, well, against all odds.

About that time I met Ronnie. This is what she tells me she saw:a scared, shaky, teary woman trying very hard to keep control.

Ronnie and I were going to a meeting with the Mental Health Chiefs:

I was requesting they pay for my home support. After all, my problem was iatrogenic. I was in anguish during tapering off the drugs. They had caused it and I thought it would be nice if I could have a little help.

We failed on that one.

But I did get some goodies: LABELS.

-Narcissistic.

-Demanding.

-I had far too many dependency needs.

-I was diagnosed a “personality disorder”.

What started my career as a psychiatric patient?

When I was young I was unhappy, worried and angry. I was scared because I was about to graduate and had to go out into the big world.

I made a very responsible decision: I went to the UBC health service expecting support, understanding, and counseling.

I received instead a psychiatric label and a prescription. Once on this treatment they were not interested in me or my worries. “Take the drugs and you will be fine.” Not so.

Eight months later:

I was crying, falling asleep, fainting.The doctors kept telling me I was well. Well people work, so I pulled myself together and went to work.

The doctors saw what they wanted. Not what was happening. I call this “evidence-biased care”.

What happened over the next decades as a psychiatric patient?

  1. I was sexually assaulted.
  1. I was raped.
  1. I was shouted at.
  1. My parents were told to give up on me. I was a lost cause.
  1. When I had a life threatening reaction and I called thepsychiatrist I was told to “sleep it off”. I could have died.
  1. I was sterilized. I didn’t want to bring children into the worldand not be able to care for them. When I asked about birth controlI decided on sterilization. I wonder now if I was even competent to make such a decision because I was on so many medications:

-two antidepressants

-a stimulant

-two anti-psychotics

-drugs for the side effects

Yet there was no question of my competency.

No alternative treatment offered.

The interview and papers were signed within minutes. Under thecircumstances, I made the responsible decision. And the process was flawed.

  1. I was always falling. I was on cocktails of drugs.

I broke my elbow. A very nasty fracture.

The bone pieces were removed and I was sent on my way.

One September I fell bruising my ribs and spent a month recovering from the pain. It wasn’t until the following March when I had just had it, that I went to the psychiatrist, made myself cry and demanded he do something. Why did it take so long and such dramatic behavior to get action?

By the way, you don’t have to be old to have a bad fall! I was 31.

  1. Life threatening respiratory problems. Nothing the doctors did helped. I now know the problems were drug related.
  1. I had awful spells of terrible stomach cramping followed by violent vomiting and then I would fall flat out and wake up in emergency.These too were medication related.
  1. I had most of the bad drug reactions: tardive dyskinesia, parkinsonism, akathesia. And the problems continue to this day inone way or another.

Never had a seizure. Amazing. They failed on that one!

  1. And then there were the withdrawal reactions. Many.The first I recall, I would writhe in pain on the sofa.

Another - I slept solid for months; and another - I was inhospital for 8 weeks. To stay calm I could not talk to anyone, Icould not move. I stayed in bed very still with the curtains drawn just to survive.

These withdrawal reactions were not diagnosed. I was given more psych labels and more drugs and even ECT.

Really, are withdrawal reactions that difficult to recognize? What is wrong with health care that doesn’t realize that in stopping or starting a medication, or changing the dose, there may be a reaction?

I was so changed, so out of control that my family ran.

I have audited my records in detail. The evidence contained is that I was getting sicker. I have a hard time understanding why the doctors would list a dozen problems and conclude I was improving. As I see it, the evidence is: the psychiatrists have a problem with denial.

This was not the folly of one psychiatrist. It was a systemic problem.

And from my current work, I see nothing has changed.

  • I saw 17 psychiatrists, including the brightest at UBC.
  • I was prescribed 30 different psychiatric drugs. And others for side effects.
  • Lots of hospital stays.
  • Specialists checked me for my drug-caused medical problems. Their reports usually would say: “Problem likely drug related”.

When specialists write such summaries and the psychiatrists go on with the drugging, it is possible that the evidence points to the doctor’s inability to comprehend what they read. I was never offered alternatives. If I was told anything it was: “I don’t know what to do”.

With so many educated people, so many policy makers, so many brains and no ongoing evidence that I was being helped, who has the problem?

I had another career: I was a nurse.

I have a master’s degree and worked in mental health, both in education and administration.

But I always lived in fear of being discovered. Within the mental health field there is zero tolerance for mental illness. If your employer suspects you are mentally ill, they find a way to get you out. I saw it happen to others. It is very scary.

I did have periods of unemployment. After recovery from an acute whatever I was told “You can go back to work.”

It is shocking when I and my ordinary friends saw that I couldn’t drive a car that the doctors thought I was capable of taking responsibility for others. How can someone work in any capacity when they are too impaired to drive a car?

How did I survive all this?

  • I have a strong faith practice in my Quaker community. Being a Quaker is my life and my living. The Friends were there for me. They helped me pick up the pieces and put together practical solutions.
  • I was clear what I needed. I knew how to protect myself. I even would write my own care plans.
  • I said NO. What happens when a patient is assertive to their psychiatrist? Ask me later.
  • I reported the violence.
  • I applied for and received my records. That was a clear message - I am watching.
  • I was very nice. Soooo hard when you are ill.

What was helpful?

As I said, I worked and I was a closeted psych patient. Sort of like an undercover cop.I felt the pressures on front line workers. I learned the thinking patterns of the policy makers; I observed the ways of the supervisors; I learned their jargon, their reasoning.

This is invaluable information for anyone working as an advocate.

Every time I was in a supportive, non critical life space I did well.

Very well. Didn’t matter if I was working or was a patient. I thrive on being treated nicely. Don’t we all?

I learned that the mental health system does not like their clients having any fun or social life. Any programs that smelled of friendship or fun were cut. They weren’t “therapeutic”. For me, the friends and fun were the healer.

I persisted. I wanted to be well. I had a vision. So, when the mental health system refused to help me I somehow ended up in the office of a knowledgeable, caring psychologist. My life started to change.

He listened, validated and educated. Not complicated stuff.

Here is the evidence of what helped: Treat me with respect, listen to me, and recognize my abilities and I can produce.

The BIG LET DOWN:

One day the psychologist told me my remaining problems were not in his domain. He thought there might be some neurological, or endocrine or something physical going on. He told me if I wanted to pursue my health aggressively I should talk with my GP.

I was angry. Go back to those who had disregarded me? Betrayed me?

Broken my trust?

Well, I did go to GP and she said I was mentally ill and I should see another psychiatrist.

So the research started. And slowly, I got the data.

It became clear: My drugs were my problem. The adverse reactions and addictions were all well documented in medical literature. That is evidence that the doctors ignored.

I needed a doctor to agree to take me off my drugs. The mental health centre with the referral in hand, told me I was not a priority. So I had to put on a show. And I did get a doctor to agree to write the prescriptions for tapering and that is all he did. He picked up the pen and wrote on paper and handed me the script.

I had read the medical literature, I gave him the research and protocol, I warned him about the risks. And he blamed me when I was in crisis, blaming me for being too dependent because I asked for home support. I was extremely ill.

So I tapered the drugs. One a time. Small, small decreases every one to two weeks. I was sick.

Tapering is not a quick process. Overall I estimate it took me two years.

This is evidence: I got off the drugs and I started to get better.

The answer to my emotional issues were

  • Not the psychiatric drugs.
  • Not the psychiatric doctors.
  • Not the psychiatric hospitals.

Here is my Answer:

All Psychiatric workers: Policy makers, Government managers,AUTHORITIES take note:

The evidence is right in front of your nose:

It’s us who live or have lived as psychiatric patients.

I visit my psychiatric friends. We tell our stories, we listen to each other, and we laugh at the folly of the system. Our thinking can be clouded, our attitudes negative and our mood angry.

But we are always right on the mark! We are not consumers. We are not mere survivors. We are emergers.

Stop drugging us, stop blaming us, stop violating us, stop silencingus.

Just respect us.

Just listen to us.

Just validate our experiences.

Just communicate with us.

Just give us choices.

All we need is our power and dignity restored.

And we will all emerge as vibrant responsible human beings. There would be no stigma. There would be no discrimination. Just lots of good people living, working and laughing in our communities.

My work as an advocate is to make this happen. We have to work together.

We cannot wait for others. Together we can do it. WOW, what a difference we can make!

The Proof is in the Pudding.

ABOUT THE PRESENTER

Daisy Anderson is a founding member of the Psychiatric Medication Awareness Group and co-author of the booklet, What people need to Know about Psychiatric Drugs. During forty years as a psychiatric patient, Daisy maintained a successful career as a nurse educator and administrator, a career that was cut short significantly by deteriorating health. Her last position was Director of a large BC mental health centre. It took years before Daisy realized her drugs were her problem. She had to go against conventional medical wisdom to get off the medications and now she provides support to individuals wishing to live free of psychiatric drugs. It is Daisy’s belief that when people have the knowledge they are better able to regain their power, take charge of their lives and become fully functioning members of their communities.

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