Undiagnosing myself

New: History in the system and my vision for mental health on Nonduality Talk — Beyond Meds (audio)

These archives  now span close to five years. They are a record of a time in my life when I was learning and transforming at a rate unlike any other time in my life. I say this as a way of disclaimer. In the earlier years of this blog I am processing shock and dismay. In the early years I am undisputedly angry. I have worked out much of that and see things in a much less judgmental manner now. This continues to evolve. I sometimes want to take down old posts because they no longer convey how I feel, but I realize that they may still be helpful to people who are going through something similar now. The journey got me to where I am today, it’s just odd to have some of it in writing here for all to see. 

Undiagnosing myself — (first published Jan 2008)

monica cassani gianna kaliI was diagnosed twenty-three years ago as Bipolar 1 after becoming psychotically manic after ingesting hallucinogens while premenstrual. I’ve said this many times, but I want to say it now because I’m about to disown my past. Finally and completely. And grab my future.

I became psychotic a number of times and that is because I took hallucinogens a number of times. When I took them when I was premenstrual I landed in the psych ward. I got my period the next day in each case. This was drug induced mania. This was PMS on steroids and the poor judgment of a young woman excited to explore the world. That’s all. Bipolar, the mental illness construct in general, didn’t make sense to me then and it really doesn’t make sense to me now.

What I was then heavily medicated for were side effects to drugs and sometimes severe emotional distress — the result of a traumatic childhood.  In other words, I suffered on occasion, like every human being. And yes, this sort of suffering exists on a spectrum of severity. Issues of being human that are pathologized rather than recognized for just how ordinary they are is the realm of psychiatry.

Therapy and a good look at my traumatic childhood was not deemed important. According to them I had a serious bio-chemical mood disorder that would never go away and that I would have to take toxic drugs for the rest of my life. Drugs that would possibly shorten my life by 25 years while making me gain 100 lbs and lose many IQ points and make me fatigued and sexless. I lived life without passion for many years. My dysfunctional behavior never addressed. My life with trauma never recognized. I was never once asked if I had ever been abused. I’ve read a number of times that the correlation of childhood abuse and mental illness is extremely high and I can say from personal experience as a social worker with the “severe and persistently mentally ill,” that a good 80% if not more were abused in some fashion. Abuse comes in many shapes and forms and parents need not be blamed in all instances, though there is no doubt that they certainly can be in many cases but this is anathema in advocacy groups since families just don’t want to look at themselves — take NAMI for one example. Sometimes abuse seems benign. That is the hardest to call. Ordinary dysfunction counts and most people just don’t realize that. All families deal with dysfunction.  We all inherit by being human. I don’t blame my parents anymore. It doesn’t have to be about hating human frailty. It can involve forgiveness and love and healing.

I also, while manic, experienced Spiritual Emergency. I had always been prone to deeply profound spiritual experiences without drugs. Again, on hallucinogens, those experiences cranked up. But I don’t believe I was crazy. Out of control yes. Out of touch with consensual reality yes. But crazy no. I was in touch with some beauty too. I was in touch with love. From my first post on this blog the story of an experience of love and spirituality:

In this altered state I had many exceptional experiences. I will share one with you. I came out of my suite one day to the sounds of people yelling. I looked down the hall and saw a young African-American man wielding a gun pointed at someone who had done him wrong in a drug deal. A veil of peace came upon me. I calmly walked up to the man who was still yelling at his customer with gun in hand. I gently put my hand on his shoulder. He turned to look at me seemingly disarmed. I said “you don’t want to hurt anyone…come on let’s go.” I took his arm and led him away to the stairwell. We walked down to the first landing and stopped. I spoke to him about love and peace, we hugged and he left. I don’t remember exactly what I said and I know if sounds terribly cheesy, but it worked. I felt a huge sense of power and oneness with humankind.

Even in March of last year I did not completely own the beauty of that moment. I called it cheesy. It was not cheesy. It was beautiful and wondrous. That was stripped away from me when I was labeled a pathology. Later in life I would have two more experiences with psychotic men with knives. I was able to talk to them and also disarm them. I was not on psychedelic drugs. I still had that gift.

So I’m shedding my label of bipolar disorder. Loudly and publicly. I’ve tried to do this many times but no one really notices. My blog title has always said “Bipolar Blast: a thing of the past…..” I use the term bipolar so as to call out to all the other people wrongly diagnosed because I believe we are thousands and tens of thousands. The label does nothing but make it easy for a psychiatrist to put us into a box. Symptom clusters are called bipolar regardless of cause or etiology. I know people diagnosed bipolar when they are really suffering from PTSD and very often they are suffering from a drug-induced mania (as in an adverse reaction to an antidepressant that doctors claim magically proves you’re bipolar). Other times people are suffering from terrible stress or simply problems with coping with life which in the spiritually inclined can simply be a spiritual crisis. Changing life-style, coming through the crisis, and taking responsibility for your behavior could be the answer rather than blaming it all on a brain disease and succumbing to the prevailing theory of mental illness.

I want to make it clear I do not judge those who choose to take meds. They are a tool and sometimes they are the only tool someone knows to use. Too often it is not brought to light that there are other tools and that many of us recover. That many of us, labeled schizophrenic, bipolar, schizo-affective, depressed and anxious have one or several episodes and move on — the “disease” worked out. Most of us don’t get to find out that is possible. Many of us don’t want to know. We are afraid. I understand this fear intimately. I do not judge. I may seem to because I have passionate opinions, because I’m angry that I’ve been burned. But when confronted with people I know in my life and even here on the internet, as long as I’m not dismissed, I grant that it is ones right and total decision to do what they want with their body. I have many friends who accept their diagnosis’ and choose to take drugs. So be it. It’s nice to live in as free of a world as possible. I do not wish that we all be the same.

Live and let live.

But this is key. Many of us who do not wish to be drugged are forced to be drugged. We live with a mental health system that is coercive. Overtly and covertly. This must be challenged and changed.

The only thing I fight for is true informed consent. Most people are not informed. Most people do not know all the possibilities that lie behind their diagnosis. I want to save people who might become “intractable” before it’s too late because I believe that drugs are often the cause of intractability. So I’m out here saying my bit. Trying to lead by example. I’m lucky enough to have escaped the often inevitable downward spiral that never ends.

It is never wise to jump off drugs without thoroughly preparing. I have done nothing without taking very good care of myself and addressed and am addressing my emotional dysfunction—yes I still have live emotional dysfunction. No one should assume that it is safe to just stop taking drugs. It’s a huge commitment and responsibility. I would say that in my case it is a calling. I was on 11 mg of Risperdal, 200 mg Zoloft, 50 mg Seroquel, 400 mg Lamictal and 3 mg of Klonopin (up to 6 mg PRN) and in the end a variety of stimulants. You have to be called to get off all that. It is a vocation. No joke. I couldn’t do it otherwise. So no, I don’t judge—after a certain point it simply becomes behemoth.

So now I continue on my journey and I am undiagnosing myself. I am human and I have problems. That is the only diagnosis I am willing to live with now. Human problems. My life has not been easy. It has been no different from that of hundreds of thousands of people labeled bipolar. I still consider all who call themselves bipolar my brothers and sisters. And for that matter anyone else who has ever been labeled with any psychiatric disorder. We are family.

For comments on this post from when I first posted it see here.

This post was first published in 2007

For the rest of the story moving forward see these two posts:

Monica’s story: the aftermath of polypsychopharmacology

and

Everything Matters: a Memoir From Before, During and After Psychiatric Drugs

New: History in the system and my vision for mental health on Nonduality Talk — Beyond Meds (audio)

*it is potentially dangerous to come off medications without careful planning. Please be sure to be well educated before undertaking any sort of discontinuation of medications. If your MD agrees to help you do so, do not assume they know how to do it well even if they claim to have experience. They are generally not trained in discontinuation and may not know how to recognize withdrawal issues. A lot of withdrawal issues are misdiagnosed to be psychiatric problems. This is why it’s good to educate oneself and find a doctor who is willing to learn with you as your partner in care. See: Psychiatric drug withdrawal and protracted withdrawal syndrome round-up

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About Monica Cassani

Author/Editor Beyond Meds: Everything Matters