I didn’t get into the mental health system the way that most psychiatric survivors do. However, once I was in, I ended up injured and disabled because of it. I have Tourette Syndrome (TS), a neurological disorder that causes involuntary movements and sounds called “tics.” In 2010, at the age of 17, when my tics suddenly became debilitating, my family started taking me to one specialist after another. No one could explain the cause for the increase in the severity of my tics. We contacted the Tourette Association of America and they gave us a list of recommended physicians to seek treatment. The neurologist who treated me was considered the top in her field and a prestigious movement disorder researcher, so after months of waiting and suffering, we thought I was finally going to get the help I needed.
At my first appointment, the neurologist prescribed Abilify off-label to help manage my tics. My family and I were new to the “medication world” and so we trusted her knowledge. It was never explained to us that Abilify was an antipsychotic, nor would we have expected one to be prescribed to treat tics. We could have never imagined that a doctor was about to give me mind-altering drugs as potent as hallucinogenic street drugs, and that something this outrageous is completely legal! We were never properly informed of the risks involved or the fact that the drugs were so addictive I could have been stuck taking them for the rest of my life.
Needless to say, this drug therapy went terribly wrong. I quickly began to experience horrific side effects that became so severe I was not able to leave my house. By the second week of taking Abilify, I had all the typical side effects of an antipsychotic and then some. I was shocked by how quickly it completely deteriorated my health. I was walking around in a drug haze looking like a zombie. I started to experience extreme restlessness, not realizing I was already in the early stages of akathisia. I lost my ability to experience any pleasure from the activities I normally enjoyed. I now realize that I was also in the early stages of tardive dyskinesia, as I had developed tremors and hyperkinetic movements. Even after reporting these movements to the doctor, she did not pick up on the fact that I was developing tardive dyskinesia.
Almost every night, I had a nightmare that was so horrifying I could have never imagined it was even humanly possible to have a dream this intense. Every waking hour, I was forced to constantly think about my breathing. It felt as if my lungs were no longer automatic and had become “manual.” I lost my ability to communicate so those around me were unaware of this drug-induced hell that was unfolding.
From an outside perspective, my parents were under the illusion that my tics were being suppressed, when in reality, I was simply suffering in silence with the majority of my side effects. Though my parents knew that the medication was not improving my quality of life, they could have never imagined how damaging the side effects truly were!
The doctor’s treatment literally made me so ill that I was unable to come to her for my appointments anymore, so she agreed to treat me via email. The doctor regularly told me to tough out debilitating side effects and when we told her that it was too much to bear, her only solution was to add more medication, which included the SSRI Zoloft. Once adding the SSRI, it was still nowhere near enough to counter the side effects of the antipsychotic, and it further complicated my situation by adding on even more agonizing side effects of its own. Every afternoon my anxiety was so intense that my teeth were constantly chattering and all I could do was sit on the floor and shiver convulsively. The doctor then suggested that I raise the dose of the SSRI even higher, but my parents and I thought this was a terrible idea since I was experiencing excruciating headaches that felt as if my head was going to crack open.
After over a year of living this way, my parents and I decided that I should get off all medication. We discussed this with the doctor, and since I was homebound because of the medication and my quality of life was actually worse, she agreed. The only guidance the doctor gave us about the “withdrawal process” was that we needed to “do it slowly,” and that “it might be a little bumpy.”
To be honest, nothing could have prepared my parents and me for the hell we were forced to live in for the next six months. The first month of withdrawal, I was basically in a comatose state. I would sit on the floor in the same position, unresponsive to anything for hours. My mind had become a black void, completely empty of thoughts, and I lost my ability to think. It was as if my life had stopped and I was living in a constant “nothingness.” During the times that my thoughts did return, I was suicidally depressed. All I could do was sit on the floor and constantly think about what a worthless person the drugs forced me to think I was. I developed extremely distorted body image issues and self disgust, where simply looking in the mirror would set off my symptoms.
As time went on and I had less and less drugs in my system, the suicidal ideation increased. My mom recognized that I was going through the DT’s (delirium tremens). I would sit on the floor in agony because I thought I had thousands of bugs crawling all over my body and burrowing into my skin. I would scratch my skin until it was irritated and sometimes bloody in an attempt to stop the sensations. Eventually, I also became homicidal and extremely violent. For our safety, my parents had to remove all sharp objects from our home, which included all forks, knives, and scissors. I needed to be monitored 24/7.
Because of the lack of resources, my parents were forced to close down their business so that they could be with me. I had such severe personality changes that I became completely unrecognizable to my parents. At that point, when my mom looked into my eyes she saw a complete stranger. I would suddenly go from total calmness into maniacal rages where I would scream at the top of my lungs for hours. During these rages I would throw things and hurt myself, which included ripping my hair out and forcibly banging my head on walls and windows.
I had become so paranoid, I was afraid to leave the house. I thought that if anyone saw me they would kill me because the drug made me think I was so ugly. My parents were constantly on edge because they never knew exactly what would set me off. When my parents reached out to the medical community for help, they were told to put me in a mental hospital, where I would be further medicated. This made absolutely no sense to my parents because I was trying to get off the medication, and it was the very reason why I was this way to begin with. So they decided we would “tough it out” as a family and hoped that it would pass quickly.
Sadly, that wasn’t in our favor as my withdrawal duration lasted almost six months! At the peak of the withdrawals, one of my worst rage episodes took place on Christmas Eve. It lasted for well over 36 hours and I was near death from complete dehydration and exhaustion. My body was in constant motion during this period and I was not able to sleep, eat, or even have a sip of water! As my caregivers, my parents were also put into the same dire situation. I was screaming in anguish, despair and hopelessness with an incredibly strong urge to kill myself and others. I was totally overcome with a feeling that words cannot describe. I felt as if I was experiencing torment so insane I didn’t know what to do with myself and that there was nowhere to escape the madness. I was hysterical, paranoid, and delusional. The drugs forced me to have an intense hatred toward humanity, but in particular, toward all those who had bullied me in school years earlier, reminiscent of the Columbine tragedy.
Once my family and I got through the horror of withdrawals, my parents really thought I was through the worst of it all and would start getting better. As time went on, we came to realize that the medications had permanently damaged my mind and body. Going into the treatment, the doctor had put us under the impression that there were really no side effects to be concerned about at all. She told us everything we wanted to hear by portraying the drugs as some type of miracle, giving us a false hope that I would get my life back. Since withdrawal, I now live with so many new illnesses that I never had before taking medication. Some of these include: breathing problems, akathisia, tardive dyskinesia, OCD, psychosis, sleep and speech disorders, and acid reflux. Also, my original Tourette Syndrome has progressed to become so bizarre and complex.
Even after I was off the medication, the doctor assured us that all the side effects would eventually go away after two years. We would later discover (when it was too late) that this was simply not true and was, perhaps, some made-up time frame given to her by the pharmaceutical industry.
I now spend my days isolated and pacing, unable to sit on furniture or sleep in a bed. I eat standing up and sleep on the floor without the luxury of a pillow or a blanket. My drug-induced symptoms force me to live this way.
Whenever we try to seek new help for me, doctors throw their hands up and say there is nothing they can do and they refer me on. I have tried a wide variety of treatments, including alternative and natural medicine. It’s hard to counter the damage of medication once it’s been done. So many doctors will not even take me on as a new patient because they already know from my initial information provided that they will be unable to help me. Often when I try to explain my new symptoms to the doctors, I completely lose them in the process.
I had my whole life ahead of me, but now I have become disabled and homebound. Because I was in the top 10% in the country for my high school standardized testing, I had been awarded a prestigious scholarship to attend a four-year college tuition-free. Due to the medication side effects, I became too disabled to take the classes, so I was forced to take a medical leave of absence and ended up completely losing the scholarship. As it stands now, I live with my parents under their complete care. I may never be able to live on my own, to work or have a career, or the chance to have a relationship. It has been four years since I have taken my last pill, and I am still experiencing disabling side effects from the medications.
In searching for answers as to what went wrong with my treatment, my family and I discovered that there is already much scientific evidence demonstrating the dangers of these medications and why they should not be used to treat illnesses such as TS. Antipsychotics are known to cause tic disorders, referred to as “Tardive Tourettism.” As tardive dyskinesia becomes more recognized as a side effect of antipsychotics, it needs to be understood that symptoms of Tourette Syndrome are part of tardive dyskinesia when they’re caused by medication. The fact that doctors, including my own, actually believe these medications can help TS patients further emphasizes how uninformed they are about tardive dyskinesia.
Ever since this happened to me, my family and I have been speaking out to prevent these kinds of tragedies from continuing to happen. We were horrified to discover that Abilify’s drug manufacturer, Otsuka, was seeking FDA approval of Abilify for children with TS. We started our advocacy work by writing a 16-page letter to the FDA to tell my story and also outline all the reasons why the drug should not have been approved. We have since learned that working with the FDA is ineffective, so we have changed direction and are now focusing on educating doctors and the public about the dangers of antipsychotics. Due to the power of the drug companies, it has been so difficult to get my story heard. We hear stories from so many families within the TS community whose children experience very similar symptoms as my own, yet the parents and doctors fail to recognize that these are side effects from the medication.
To tell my story through music, I wrote a cello concerto entitled “The Eternal Sorrow” (embedded below). It is written in honor of all those injured by psychiatry and psychiatric medication — not only those whose lives were lost, but also those who are living and continue to suffer from the harm done. The title of the song refers to the permanent damage that psychiatric medications can cause to disable people for the rest of their lives. Through the song, it is my goal to raise awareness about the serious risks associated with psychiatric medications, and use it as a tool to connect with others in the psychiatric survivor community. In the background of the song, the swelling of the strings in waves are reminiscent of the torment I experience on a daily basis. My symptoms hit me like a ton of bricks and then die down only to give me a false sense of security because they will be coming right back again with a vengeance.
My story further emphasizes the dangers and futility of psychiatric medication. As in my case, it was used to treat a physical illness instead of the typical mental health uses. In an attempt to try to “fix” my brain, they ended up destroying it. As psychiatric survivors are well aware, these medications do not heal, and at best, simply suppress symptoms.
The medication was given to me outside of the realm of psychiatry since it was prescribed by a neurologist. Psychiatry is not only injuring patients in the system, but it is injuring patients who should not even be in the system to begin with. Every single drug the neurologist prescribed to me was psychiatric; she never even prescribed any neurological ones. Because of this, I feel that my treatment was nothing more than the ills of psychiatry disguised as neurology.
Please note: If anyone is making a documentary about the dangers of psychiatric drugs, I am willing to donate my song to the film’s soundtrack.
Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.