Undiagnosing myself

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

(2013) These archives  now span over  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)

I was diagnosed twenty-three years ago as Bipolar 1when I lost touch with consensual reality after ingesting hallucinogens. 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 what was diagnosed “psychotic” a number of times when taking hallucinogens. Interestingly enough it was always associated with the hormonal fluctuations before menstruation. l I landed in the psych ward a few times and each time I got my period the very next day . It was basically a hallucinogen induced spiritually oriented mania of sorts. I was nineteen years old. I was in college. This was the poor judgment of youth and also a genuine excitement to explore the world and consciousness.  Bipolar, the mental illness construct in general, didn’t make sense to me then and it really doesn’t make sense to me now. I was sensitive and wide open and things got out of control.

What I was then heavily medicated for were the side effects to other medication they were giving me and sometimes severe emotional distress — the result of trauma in 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 that might address post traumatic stress from childhood was not deemed important.  Nor was there any attempt to look at the psycho-spiritual content that had arisen. That was simply dismissed as psychotic and thus without value.

According to the psychiatric system I had a serious bio-chemical mood disorder that would never go away.  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 emotional pain and sometimes difficult 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 that which gets labeled 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 90% if not more deal with significant trauma in their histories. Abuse comes in many shapes and forms and parents need not be blamed in all instances, though there is no doubt that they certainly are also sometimes the source of trauma– this is anathema in advocacy groups since families just don’t want to look at themselves — take NAMI for one example. We need to heal as a society, as communities and families. People do not become what gets called mentally ill in a vacuum.

Sometimes abuse seems benign. That is the hardest to call. Ordinary dysfunction counts and most people just don’t realize that.  Neglect too is abuse. All families deal with varieties of 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 too.

I also, when labeled with mania, was experiencing 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. I used it frequency to de-escalate folks in crisis when I worked as a social worker.

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 early on was entitled “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. We might be considered unrecognized shaman too. Our society doesn’t have anyone to guide and initiate us. 

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 heal.  That many of us, labeled schizophrenic, bipolar, schizo-affective, depressed and anxious have one or several episodes and move on — the “disease” worked out.  We might view these “episodes” as healing crisis. Most of us don’t get to find out if it’s possible to heal. 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 hurt so badly. 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 psych meds. 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. Standard psychiatric care is coercive (yes, the United Nations calls forced treatment torture)

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 pain and trauma.

It should not be assumed 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 and certainly not everyone has the resources to do it. (internal or otherwise — the medical establishment doesn’t actually help).

So now I continue on my journey and I am undiagnosing myself. I am human and I have human challenges. 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

Support Everything Matters: Beyond Meds. Make a donation with PayPal or Enter Amazon via a link from this blog and do the shopping you’d be doing anyway. No need to purchase the book the link takes you to. Thank you!

About Monica Cassani

Author/Editor Beyond Meds: Everything Matters

27 Responses

  1. Liz

    I think this is possibly one of the more important decisions one can make in their journey of recovery: ditching the diagnosis and accepting that we are part of the human condition and nothing else. The DSM is only a billing bible, thus the labels that fill it are only definitions of various numbers that are used for insurance purposes. As a consumer within the psychiatric industry, however, and especially from early, uninformed participation, one can, and usually is, easily brainwashed into buying into these goofy, subjective, and wholly unscientific definitions. Depending on how one wishes to look at it, it’s either a thick line or a thin line that separates one from ascribing to the definition of a given label or that of exercising their right of good ‘ol human ‘beingness’ and the spectrum of emotion that belongs to it.

    Good for you for ascribing to the latter!

    Like

  2. Pat

    Gianna – Your eventual complete recovery from psychiatric abuse is assured. Your post is intelligent, forthright and moving. Your ability to rise above is inspiring. I hope your trip to California is just what you’re looking for.

    Like

  3. Ametyst

    Thanks for your post. It was very honest. I have retyped this comment a few times now so this is my final attempt.

    Psychiatric Survivors can all feel how they are caught up in a web. We are given a diagnosis and medication and that basically is what is offered to us from the services. We also have to live through the stigma of being psychiatrically sick. The general public does not understand, due to lack of education. Psychiatric illness is pushed under the carpet – not spoken about. The public will remember the movies where they have seen ECT in action as horror movies.

    A shake up is needed. For the patient to have a choice, for doctors to present the alternative side to treatment. For drugs to be limited and not given so freely. Respite units to help in withdrawing from medication is needed.

    There is too much money involved in the drug industry.

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  4. I haven’t noted it myself, just quietly removed the word bipolar from the title of my blog this week myself. Good luck on the journey, I know you have already succeeded.

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  5. What a wonderful post to read and reflect upon! I have been in recovery for the past 20 years. First, from alcohol dependency, combined with recovery of my sense of self, my self-esteem if you will.
    I have been labeled as “depressive” in my history.
    But the longer I am in “recovery,” I’ve learned to accept that depression is just a part of who I am, it is NOT who I am.
    My recovery involves going back and challenging all of those “core beliefs” that were foisted upon me by the “Gods” (parents, older siblings and any adult in a position of authority such as educators, religious instructors, etc.) of my childhood.
    As a child I was powerless. As an adult I am not powerless over what I choose to believe about myself. That little girl is still inside of me, the little girl who was told to be “seen but not heard”. The little girl who at one point chose to become invisible and silent, fearing retribution from others. The little girl chooses to be seen and heard these days. Some folks do not like my “voice,” imagine that!
    Good luck, my friend. You continue to be an inspiration!

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  6. Denise

    a poem for you!

    Butterfly

    On these fragile wings
    I flutter through the world.
    With thoughts of beauty and grandeur
    I set about this journey.
    Finding my way through the weeds,
    Desperate to overcome this antagonistic wind.
    Determined to persevere
    Through this harsh migration.

    By Brandy Wehnes

    Like

  7. Beth

    I can identify strongly with your experience with your family – mine is similar and so are my reactions. I cant blame someone for human frailty, anymore than I would like someone blaming me for mine.

    Some years ago I had an experience with labeling. I was talking to another person with a diagnosis when I defined myself with my current label “bipolar.” This was before I became aware of the hazards of the mental health and psychiatric system. She was very concerned about how I identified myself so closely with my diagnosis, as if it did define me.

    I began to think about the meaning of a diagnosis after that, and ever since. And I realized it is not what defines me, I am what defines me. I applaud you Gianna. It is what we believe and how we live and what we try to accomplish in our lives that makes us who we are – not the label someone gives us who sees us once every six weeks for fifteen minutes.

    I remember getting upset when I was given yet another diagnosis, when another person said to me – “its just another term, nothing has really changed.” That made it more concrete for me.

    And I can speak from experience, withdrawing from these drugs is a fulltime commitment, and requires dedication to what you are trying to accomplish. To me we are all martyrs.

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  8. Didi

    Gianna:
    I read your post on the benzo site and often visit your blog. This is my first comment. I think you are a terrific person. I love reading about your journey of reclaiming yourself and your life. I am cheering for you all the way to the finish line. Good luck in California. Be careful not to expect too much from this MD. There is no one answer. It’s a process and each step brings you closer to your ultimate destination. Keep the faith in your- self.That’s where all the answers lie. Best of luck. Didi

    Like

  9. Amisha Patel

    Reading your posts is truly a blessing, thank you for sharing and passing along the motivation.

    I wish you all the best, and I imagine one day when I will hear from you, as you are completely passed all of this, and have moved on to only providing the support that others need for getting past all of this also.

    love,
    Amisha

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  10. Re-writing history –

    You’re right where you need to be –
    You’re on your way to getting this thing done –
    You’re on your way to moving past, moving beyond – going to another level –

    I can feel it –

    You go Gianna!!!

    Your friend in Dallas,
    Duane

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  11. Gianna,

    I came across your blog while I was searching for information about psychiatric drug withdrawal and boy, am I glad I did. I’ve read a bunch of your entries and I can relate to a lot of what you talk about, especially in this entry, the weight gain, being diagnosed as bipolar after a drug induced mania, and just the horrible feeling of feeling drugged and sluggish. I was “diagnosed” last year as a 20 year old college student and drugs have just slowed down my life and made me unable to think or function in an intellectual manner. As of a few days ago, I realized that I didn’t want to feel dependent on drugs anymore as they are running my life. Thank you for giving me hope that it can be done and life can go well. Much thanks for a new avid reader.

    -Anaïs

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  12. Glimpse Inside

    Wow… So many mind affecting medications can surely create a disorder on its own.

    I very much agree with you that trauma can trigger depression or bipolar. Probably the vast majority of depressions and other mood disorders are a result of trauma. The challenge, though, I think is navigating trought the emotional labyrinth, finding the clues and “fixing” them. Sometimes the trauma may be so early in life, that it may be impossible to conciously remember it, eventhough the emotional impact may be sticking with you day by day. Or it maybe not be a single traumatic event, but a combination of many events. It is interesting that your “condition” started as if from nothing, that is not as a response to a stressful event at that time, or thats at least how I understood it. My problem also started out of nothing, instantly, when I was about 17 years old. Maybe as some kind of delayed action bomb, or something similar, but it still remains a mystery; and no matter how hard I try to recall what I have been thinking off at that time, I can not remember it.

    Good luck with your journey, and I hope you can come out of your troubling condition soon!

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  13. jaaz

    I have been on seroquez, clolazapem, and zoloff. I have been under pys. care for 4 years and taking these medicines. Instead of addressing my issues i have been so medicated that it’s like i have been asleep for the last few years. I think i misplaced or threw away my pills 21/2 weeks before my next prescrip. appointment with the psyc. I tried to get them refilled but no, it was not my time so i had to wait. I ended up in the hospital from withdrawals , i was so dehydrated they couldn’t get a temp. or blood. My body convulsed as if it had a mind of its own. my body hurt so bad i thought i was dying, i was numb all over. i felt like my throat was closing up and knew if i didn’t get to the hopital this might be my last day. I thought i had a virus, i never dreamed i was in withdrawal. Can’t wait to see the psyc. and give him a piece of mind for dropping the ball on me. Now that i see how dangerous these drugs are i want to be drug free. I am out of the hospital today feeling much better as they hydrated me, gave me shot for the shakes. So these pyschotic drugs are not to be played with. I have decided to be proactive and change my diet, get more exercise and take care of myself without the drugs. youve heard the book change your brain change your life. The first thing is to get off all of this “legal” medication that has almost driven me crazy and took four years of my life and almost killed me from dehydration. The emergency room doctor said never go cold turkey from these drugs, it could get serious and it did. but i have no control over the prescriptions and insurance and when they will pay ect. NEVER EVER DO I WANT TO EXPERIENCE SOMETHING LIKE THIS AGAIN. Anybody who wants to get off all of these meds, please let your doctor put you on some kind of tapering off system or something…….thanks for reading, jaaz

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  14. wendy

    wow gianna

    reading this post i feel right at home – my first involuntary hospitalisation was in similar circumstances

    thanks for sharing so honestly – i am often too ashamed
    to admit that illegal drugs have been as much a problem
    as the ‘legal’ ones

    for years i lived on coffee, cigarettes and marijuana – and very little else – today i am off the coffee and dope but still dependent on tobacco

    progress of sorts, i guess

    wendy

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