MentalHealthRightsYES - for Mental Health Rights
Terry’s Story
I first became aware of Robert Whitaker’s book, Anatomy of an Epidemic in the summer of 2010, and found I could not read it without experiencing debilitating grief and panic.  I was reading what sounded like the story of our three daughters in the pages of his book.  For 15 years, I had subordinated my maternal instincts to medical professionals who had put our daughters on an entire array of psychiatric drugs.  As a pediatric physical therapist with 10 years experience, I had been a full participant in the medical model of treatment.  Part of our professional ethic is to first, do no harm.  I was shell-shocked as I realized that our younger two daughters who had both received a diagnosis of bipolar disorder probably did not have the stigmatizing mental illness with which they had been saddled.  The very medicines first prescribed them as pre-teenagers had most likely created what is called an iatrogenic illness: an illness caused by the drugs.  After seeking non-medical treatment for the emotional pain I was experiencing, discovering terms like Secondary Post Traumatic Stress, EMDR (Eye Movement Desensitization and Reprocessing), and dealing with my guilt, I was able to finish reading Whitaker’s book.  Now, I was compelled to take action. 
I decided to work positively to educate, empower and encourage others about the information contained in Anatomy of an Epidemic as well as other resources now coming to light.  I created a Facebook Group and Page called “First Do No Harm.” In gathering information, I found facts and links about psychiatric drugs and alternative resources that work better in many cases than drugs for mental health care.  Included are stories of persons with diagnostic labels they have overcome and who now live beyond medications.  Through my volunteer work, I am finding support and meeting others who tell of even greater horror stories of a mental health industry that continues not only to experiment with psychiatric drugs on younger and younger patients, but also force injects them into adults as chemical restraints.  In the news are stories of children being taken away from their families when a parent refuses to give them medication.  There is much work to be done to create a new paradigm of mental health care that will first, do no harm.  This new paradigm will have practitioners judiciously use medications as only a part of optimum care and recognize the research that demonstrates medications can and do often create a more debilitating mental illness than was originally diagnosed.
My own personal foray into antidepressants was brief, lasting only a couple of years as I did not like the side effects.  I researched and found natural supplements to help me through the emotional stress I was experiencing as I advocated for our daughters who were suffering in school from relational aggression and worse.  I put aside my professional career to devote time as a volunteer in their elementary and middle schools in an effort to improve the environment.  I volunteered to teach a course at our daughters’ elementary school based on Gershen Kaufman’s book, Stick up for Yourself, a program designed to teach children to identify and accept natural feelings, needs and wants and to practice making conscious choices.  It was only a drop in the bucket. 
All three of our daughters eventually complained to me one day about how they didn’t want to feel as it was getting in the way of them fitting in with their friends.  The cost of being in touch with their feelings was making them too sensitive, and daily situations arose where they found themselves victims of abuse; teased, ostracized and isolated from their peers.  How each handled this dilemma was unique to their individual personalities and strengths.  They all were prescribed antidepressants by the medical profession.
Our oldest daughter tried and did not like any antidepressants prescribed to her as a teenager.  She took them only briefly, and though various doctors and counselors over the years recommended she go back on them, she refused.  I observed her natural ability as an extrovert to fit in with the popular crowd, toughen up and push past her feelings, avoiding her natural sensitivity as much as possible.  She found an array of activities to keep her busy, eventually graduating from college while joining the United States Marine Corps Reserves and served for a year in Iraq in 2007.   Upon her return as a Veteran, she briefly entered counseling to aid in her re-entry back into her civilian life.  I hope you get to meet her one day.  She is an inspiring, courageous and compassionate young woman who plans to begin a Masters in Social Work this fall to help advocate for Veterans.
Our middle daughter, the most sensitive, who was diagnosed with a learning difference, had been on Ritalin since fourth grade and added an antidepressant to the mix when they were prescribed by a psychiatrist to her as  a pre-teenager.  She had an “acute psychotic episode” while on these two drugs her freshman year of high school and spent 10 days in an adolescent psychiatric ward.  She was discharged with a new diagnosis: bipolar disorder.  I knew something was wrong when the lithium that is supposed to work for what she had, didn’t, and only made her hair brittle and fall out.  She became so weak she had to give up playing volleyball for the high school team, an activity where she excelled.  After we discovered the psychiatrist had missed that her thyroid levels were off due to the lithium, I took her back to our GP who literally rubbed his hands together and said there was an entire array of new drugs we could try.  I remember feeling relieved that there were medicine alternatives.  He said bipolar disorder is like diabetes and that you need to take the medicine for the rest of your life.  It might take some experimenting, but there were many combinations to try.  This is the same line verbatim that I read in Anatomy of an Epidemic years later as that which pharmaceutical reps script doctors to repeat.  At that time, I had no knowledge of nor had found any evidence as to the dangers of the psychiatric drugs now being prescribed as I researched about bipolar disorder and their medications.
Eventually, I came to realize that none of the doctors knew what they were doing as drug after drug combination did not work to ease our daughter’s emotional pain. Weekly talk therapy with a sensitive social worker seemed to be the best at helping her. That and our continued hugs, talks, encouragement, and advocating for her in school, fighting teachers who mistakenly labeled her innocent questions as bad behavior and the drug cocktails were still not enough as she began cutting herself and eventually became suicidal during her senior year of high school. 
After years of struggle, and because of my own experience with it, she has begun EMDR,  a non-invasive treatment for posttraumatic stress disorder, which is allowing her to successfully wean off her medicines.  The doses are now far below “therapeutic” levels, and she can see the light at the end of the tunnel:  a day in the near future when, if she chooses, she can discontinue all medicines.  She is successfully holding down a demanding full time job in medical insurance billing for a non-profit hospital system.  Her strength of spirit and beauty are stunning.  I hope one day you meet her, as she is a light to all who come into contact with her.
Like her two older sisters, our youngest daughter’s depression was also situationally based and had its origin in multiple traumatizing incidents.  She had been taking various antidepressants since age 11 and experienced an “acute psychotic episode” while taking wellbutin, an antidepressant that also has stimulant properties.  Under the care of a psychiatrist, she, like her older sister has since been tried on almost every combination of psychiatric drugs.  The drugs only served to severely sedate her, and she had been sleeping for 14 to 18 hours a day… for seven years…. while completing high school and working to chip away at her college education.  When taking a break from college for a year, she even managed to successfully hold down a full time job.
When she landed in the ER while her father and I were out of the country on a much-needed vacation, last summer, she called and told us the story.  The psychiatrist had just put her on Geodon, a drug of last resort, having forgotten that she was still taking Depakote.  Fortunately, her roommate called 911 when she found our daughter unable to walk and complaining that her brain was shutting down.  Our long distance advice to our daughter was to stop taking this drug, no matter what.  When her psychiatrist advised her to only lower the dose, we sprung into action.
Armed with what we were learning in Anatomy of an Epidemic, my husband and I accompanied our daughter to support her as she talked with the psychiatrist about how to  withdraw from all medications.  She was told that it could be done in less than 3 weeks.  Our daughter then asked the psychiatrist what she could do to support herself while withdrawing.  She was advised to eat properly, get exercise and rest; all good things.  I suggested that we could re-involve the Naturopath who had unsuccessfully tried to collaborate with the Psychiatrist for the past two years when our daughter had originally wanted to come off medicines.  Our daughter knew the withdrawal process needed to take much longer than three weeks, was appalled at what had happened to her, and finally said, ENOUGH! 
She stopped seeing the psychiatrist and with the help of the Naturopath, tailored her withdrawal from the medicines.  She completed coming off all prescription medicines six months ago, and it was not easy.  She now sleeps a normal 8 hours a day and describes herself as being able to form sentences and think clearly for the first time since taking antipsychotics.  Though her recovery has been remarkable, her past still haunts her; isolation from her peers and wanting to fit in, while carrying a stigmatizing and unnecessary diagnosis is traumatizing in itself.  She continues to struggle to find the parts of herself lost over the years as she recovers not only from the effects of the medications, but also from the past traumas she has experienced.
Recently, she became very agitated, could not sleep and called us in a panic.  She was losing touch with her reality, not realizing she was experiencing flashback, and afraid she needed to go back on her medicine.  She said she would rather die than do that.  Everything I had experienced screamed at me to stay away from doctors.  My husband and I brought her to a low stim environment where I listened and supported her understandable distress, fear, anger, rage and shame, sometimes into the wee morning hours—whenever it was needed.  It wasn't easy for any of us.  I was determined, had an unfailing belief in her process, and let her guide me and rage at me if needed, and shared with her my observations and insights.  We worked on breaking down her flood of feelings and flashbacks or "mania" if you want to call it that into manageable feelings, meaningful acceptance and action.  I supported her with Reiki and massage and hugs and space.  She reluctantly used .25 mg of clonazapam or 1 mg of lorazapam or 2 mg of ambien to help her sleep when she couldn't on her own.
She emerged after this five-day respite clear minded and determined to trust her instincts and listen to her feelings.  She came off the low dose of sleep aids within a week and found she no longer needed the supporting amino acid supplements as well.  She is now working with a trauma-trained therapist to begin for the first time to effectively address her past.  She expresses the clear awareness that had she entered trauma treatment earlier, it would have made a huge difference in the course of her life.  She is back in her apartment with her roommate, is taking the final class to complete her Associate’s degree this spring and excited to continue work toward her Bachelors in Environmental Studies at PSU beginning this summer.
Her story is a testament to the resiliency of the human spirit and of one determined, smart, tough and sensitive young lady.  The light and love in her eyes, her ability to feel, experience and state the truth all support her natural ability as a leader.  I hope one day you meet her, as she is a remarkable young woman with a strong passion for justice, a quick wit and amazing insights.
A research paper on peer crisis respite intervention that affirms the process we used to support our youngest daughter during her recent emotional crisis is up on First Do No Harm.   Peer crisis respite and other alternatives such as E(motional)CPR and Open Dialogue are used successfully around the world to help those in emotional turmoil.  The common denominator in these healing alternatives is that they focus on feelings as natural, not something to be pathologized, and use relationship as the path toward wholeness.  I have also found YouTube videos by Dr. Melrose that provide an excellent explanation of the brain's natural mechanisms as an alternative way to look at how the effects of stress and trauma get labeled as ADHD, Depression, Bipolar, and Oppositional Defiant Disorder.
In the end, the labeling of our daughters’ natural emotional responses as pathological is what led us down a path that did nothing to heal their distress and in fact compounded it.  We naively trusted the medical profession that psychiatric drugs would at least do no harm.  The shocking truth is that our family took a 15-year detour when we allowed the pharmaceutical industry and doctors to experiment with one drug after another on our daughters which resulted in the diagnosis of a traumatizing and stigmatizing, iatrogenic mental illness for the two who cooperated in this money maker for the industries, only to discover that the most effective medicine is compassion, connection and healthy human relationship.
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