Undiagnosing myself
February 15, 2008 by giannakali
I 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. Each time I took them (only if I was premenstrual) I landed in the psych ward. I got my period the next day in each case. This is drug induced mania. This is PMS on steroids. That’s all.
What I was then heavily medicated for were side effects to drugs and personality quirks or more clinically, a personality disorder or (god-forbid) characterological problems. And if you go by the DSM IV these personality tendencies I had were mild—I had no full-blown case of a diagnosable disorder, but I was uncomfortable at times and my doctor wanted to help with lots and lots of medication. Therapy and a good look at my traumatic childhood was not deemed important. I had a serious bio-chemical mood disorder according to them that would never go away and that I would have to take toxic drugs for 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 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. I don’t have time to find documentation right now, but 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 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. But mind-fucking counts and most people just don’t realize that they may be doing that to their children. And I might add that as a mind-fucked child, I don’t blame my mother. I know she did the best she could and she is a good woman. My father was an abuser, my mother passed on her mind-fuckedness to me. I do blame my father, and my mother is not without responsibility though I love and forgive her completely. She is a big enough person to own her dysfunction and forgive herself. It doesn’t have to be about hating human frailty. It can involve forgiveness and love.
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 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 owning your shit 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 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.
I write this in the early morning of the day I travel to California where I hope to find the key to finishing this long journey I’ve been on of psychiatric drug withdrawal and recovery. I am reclaiming my life and documenting it here.
For comments on this post from when I first posted it see here:
Trying to navigate my way through several blogs from your site. “Furious Seasons” has an enormous amount of info.
Thank you for such well expressed description of drug induced craziness. As you know from another website I have made my journey back to finding “me” again.
If only I could erase all the misdiagnosing on me that’s in so many medical files. I did have the doctors’ office sign forms that they couldn’t forward ANY info on me without my notarized signed consent. Hope it works….
Here’s to a world free of giving folks frightening labels and mega drugs instead of listening.
Funy thing, I read some books, “You Mean I don’t have to feel this way?”, there was a section on Bipolar, and well my Granny was looney toons, so I thought it explained why my life wasn’t working. Instead of looking inside my heart, and soul, I chose to think I was looney instead of my marriage was a desert, my sons would soon be gone, and I had short changed myself, lived an illussion far too long. I am not a quiter, hated thinking I had done the wrong thing, staying with him, and yes I was pre menopausal, and my Mom was dying slowly over 5 years. A lot of life altering changes, but no reason for a shrink not to understand the whole person, and load me up with mine altering drugs…. Getting my weight out of hand, he then gave me more medication as I was large!
I met a gal last fall at a NAMI meeting, who was in a weight loss program. I asked her what her meds were. First thing out of her mouth, was Zyprexa. I said hon, look at your meds, google, before you spend money on weight loss, all the dieting in the world, cannot correct some medications. I know the nutritionalist she’s working with, she should have known better, but she’s in it for the money. And I’m sure this patient s on assistance, so there’s the System for you. No checks and balances, which can indeed be harmful to your health and well being.
Thank you. Dear Gods, thank you for this blog.
I fully support you in your drug withdrawal as I too wish
to be drug free of psychotropics gradually. I am sick of listening to psychiatrists and therapy doctors tell me they claim they know that “everyone has evil thoughts,”"What are you guilty of!” and “you are a mean person.” “So do you want to kill anyone?” over and over again, and “Can’t you see you can’t finish college!” It is not just the drugs I need to get away from it is all the negative talk which accuses me of having evil thoughts that I clearly never had. In my opinion, it is the psychiatrists and therapists who are grossly psychotic because they go so far as to accuse people of future crimes, people who never did or say anything evil, but they can get everyone on their side, and that is one
reason I got canned from my last job, is because of all
the stereotypes I got labeled with that have nothing to do with my character and the good and upright life I have led. I am pretty determined to keep those liars, slanders conartists, and libelers out of my life. And I agree with you about childhood trauma too. I was a foster child, and you know how they get stereotyped too. But I got into an Ivy league school when I was 17 after going to 12 different schools and none of those loser doctors or loser therapists could ever do that, and then they had the nerve to tell me I couldn’t finish college. I had to put up with their verbal abuse for many years. They forced me to do volunteer work and wouldn’t let me go to school. But I kept fighting and graduated with high honors in an Engineering degree, against their “advice”, encouragement or faith in me. And almost all the women in the hospital had been molested as a child like me too. Then Nami goes and says that it is the molested children who grow up to suffer mentally that are “likely to commit serious violence.” I am sick of NAMI, I am sick of therapy, I am sick of psychiatrists, I am sick of drugs that caused tardive dyskinesia so bad I couldn’t read until my dose was lowered. I have to get away from them if I am going to survive, because all the things they did to me was worse than my original illness. I am determined to keep those cynical scoundrels out of my life for good. They have done more harm to me than all the abuse I endured in foster care and by my parents.
WOW I surely identify with this after my 12 year sojourn with psychiatry. Thanks for the big honestly about Mental Illness in all these posts, my daughter in the last two years has sided with my ideas that the big Pharmie companies are in a bog pay out to these mental health centers having people eat meds like jelly beans out of a candy dish. Yes I have supported NAMI and have read many stories of mental illness, but in the end it seems like coat yourself with honey and then tie yourself to a tree and wait for the Bear to come and devour you….. I have a PTSD list of things that is like some ocd folks and there can never be a drug to cure this or lessen my panic attacks. I must use my own therapuetic tactics to conquer my fears. I believe that mental illness is just big business and it is an Inconvient Truth, a way to get $ from HMO’s and Medicare, just more money for profit while Human Spirit is overly medicated. I say Just no to Drooling on myself, I have seriously said NO to DRUGS, Antipsychotics.
My daughter was diagonised with Bipolar at 19 and is now 31, she recently took herself off all her med’s and seemed calm, she was kinda forgetful and stressed some, but I would really like to believe she can do with out the zyprexa and lythiam.
She informed us she is PG and not taking any med’s , can anyone give us advise?
Thanks so much, how can I help her get through the withdraws and keep baby healthy. She is unmarried and her boyfriend is not ready for baby or her mood swings currently.
Thanks again, Cindy
Cindy,
The best thing I can recommend is that your daughter learn to care for her body and mind through things like diet, supplements, yoga, meditation and exercise…
You can go to the “about” page on this blog (at the top of the page)
and check out these yahoo groups to learn about alternative health care for mental health:
http://health.groups.yahoo.com/group/ALT-therapies4bipolar/
http://health.groups.yahoo.com/group/safeharbor2/
Staying healthy is a long term commitment and your daughter is the one who needs to make it. You can’t do it for her…
good luck.
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