The Power of "No"

About 4,000,000 people in America take antipsychotic medications to treat conditions from bipolar disorder to schizophrenia, many of whom have never experienced psychosis.¹ Between 20% and 50% of these people will develop symptoms of tardive dyskinesia (TD), a potentially disabling syndrome characterized by involuntary movements of the face, lips, tongue, trunk, and extremities that brings with it unbearable social stigma.² After 25 years of being labeled as Bipolar I, a diagnosis I have formally disputed, and 25 years of being prescribed antipsychotics as an off-label use³ despite never having experienced psychosis, almost 20 of those years disabled by TD, I said "no" to antipsychotics and "no" to my compulsively compliant and almost maniacal pill popping designed to acquiesce to the dictates of the medical community, society, and my family. I was led to believe that antipsychotics were mandatory to correct my inherent defects that made me fundamentally unacceptable. In the six months after starting a taper to wean me off antipsychotics, I went from sitting by the sidelines incapable of participating in physical activities, relying on a handicapped placard, unable to play with my child on a jungle gym or walk on the beach, living in a ranch house to avoid climbing steps, and wearing a brace that demonstrated to the world that I had a disability whose nature I felt had to remain hidden - to taking ballet, climbing to the top of rock walls, ice skating, racing my daughter to the top of the staircase, placing my brace in deep storage, and relegating my hangtag to the trash heap. "No" is the most powerful of statements. In the twisted world of psychiatry, few patients can muster the power to definitively and categorically say "no" to antipsychotics. I have never doubted my decision to say "no".

For most of the 25 years I took antipsychotics, I did not believe "no" was a statement available to me. I was the achiever, the conforming one, convinced that demonstrating compliance with psychiatric dictates to take antipsychotics was the only pathway for me to achieve anything significant in life either professionally or personally. This belief persisted despite my educational achievements: I graduated with distinction and departmental honors from Stanford University, I earned a master's degree in elementary education from the University of Pennsylvania, and I graduated with high honors from Rutgers Law School, all while desperately trying to hide the reason I received academic accommodations. The belief persisted despite the knowledge that I was a loving, devoted mother to my now-ten-year-old daughter. I worried that my use of antipsychotics would cause difficulty when I sought admission to the state legal bar, and, indeed, it did. It delayed my application not because of my acts or omissions but because of my compliance with psychiatric dictates. I am now proud to be an attorney, representing people on psychiatric medications who are unaware that we are similarly affected.

However, my clients lack my educational and economic resources and thus are unaware of their power to say "no" to the psychiatric establishment when facing debilitating TD.

A few years ago, I started my attempts to say "no" to antipsychotics. I began to believe there was a world for me beyond the crippling mental and physical limitations imposed by these medications that I had not experienced since college. And even when I - a lawyer, a Stanford grad - said "no" to antipsychotics and asked to be let free by my psychiatrist, I was told maternally: "No, Ellen, you need to be on these. No, I don't feel comfortable taking you off." These repeated noes came from my psychiatrist of 24 years - a professor at the University of Pennsylvania School of Medicine - who has affirmed that she never observed any signs of mania or psychosis during that entire time she treated me. My diagnosis that supposedly necessitated antipsychotic medications was made by another psychiatrist when I was 20, and psychiatry views my diagnosis as lifelong without the possibility of modification. And still, despite more than half a lifetime of stability, the psychiatric dictate to me was clear, and the answer to my "no" to antipsychotic medications, to my declaration that I wanted to take the uncertain plunge to see if there was a "me" beneath the antipsychotics, was still a definitive "no". When queried why, my psychiatrist gave me the usual response that boils down to, "look, you've been on them for almost 25 years. We just don't take people off after almost 25 years."

Frustrated with the system but at the same time desperate to show that I was compliant with its dictates, I brought my then-husband to my psychiatric appointment to say that he supported my "no" to antipsychotics. This support at long last elicited the "yes" for which I had waited. I thought stopping antipsychotics would potentially free my mind, but I had been told by doctor after doctor there was nothing I could do to free my body, short of perhaps brain surgery, which I declined. Thus, my hopes were limited with respect to my TD symptoms improving as I had been convinced by the "best of the best" they were forever and would not stop even with termination of antipsychotics. It turned out that all of the "best of the best" were wrong.

In April 2022, I started to taper off antipsychotics. By August, I knew something had fundamentally and permanently changed. I climbed stairs and forgot to wear my brace. By September, the brace and my handicapped placard were tangible reminders of TD that I hid deep in a closet. In October, I enrolled in ballet and cried at doing something in which I never imagined I could participate.

On November 13, 2022, I was off antipsychotics. Completely. Finally. Definitively. Because I said "no."

It took me 25 years to successfully say "no," despite my education, resources, support, and job as a legal advocate for the disabled. If it took me 25 years to say "no" and to regain a life that had been painfully constricted, where does that leave the approximately one million other individuals on antipsychotics fighting and hiding TD who may never have been given the opportunity or the power to definitely say "no"? By saying "no," I overcame the fear of absolute disaster and was rewarded with a life regained. The process of accepting that what happened to me was not inevitable fate and overcoming the fury and desire for unproductive revenge that accompanies this realization will take a lifetime.

This is the story of an attorney who hid the use of antipsychotics and then tardive dyskinesia for 25 years and ultimately succeeded in regaining her life. I was prescribed antipsychotic medications as an off-label use while a junior at Stanford University due to bipolar disorder despite never having experienced psychosis. At age 25, I developed disabling tardive dyskinesia, relying on an ankle brace and handicapped placard, and nonetheless I remained on antipsychotics. At age 45, I successfully tapered off antipsychotics, threw away the brace and hangtag, and was able to climb rock walls and ice skate. This is the story of how I said "no" to antipsychotics, how the psychiatric community treated my "no", and how I ultimately regained my physical vitality after 20 years.