A month ago, I shared the story my friend Kathleen had written before she died. She had asked me to publish her words, her own suffering, on Mad in America, so that perhaps it could help someone else. When I saw the responses to her story, so many people expressed that it was too bad she wasn’t here to see the validation, support and understanding. People were asking why she didn’t share this while she was alive. There’s so many stories shared online after people have passed on due to psych meds and the broken mental heath industry.
I want to take this opportunity to share my own story and open up communication before it’s “too late.”
I have been diagnosed with terminal heart/lung disease, akathisia, and mast cell activation, all caused by the psych medications. I also have a plethora of health issues like frequent falls and broken bones, kidney and liver issues, and female issues, to name a few. When the symptoms from psychiatric medication withdrawal and akathisia became unbearable, I tried many non-medical treatments, supplements and natural remedies. After spending a lot of money on hope, my symptoms only became worse!
My doctor estimates that I have less than a year to live. He told me that I should prepare for transfer to a long-term care facility and/or hospice.
I do not want to participate in these broken systems anymore. I do not want my life to end as it began, with trauma, pain and dehumanization. I really would like dignity and compassion in my final days.
It’s difficult for me to say goodbye to my two wonderful adult daughters, my three beautiful grandchildren. All of whom have always been kind, respectful and loving towards me. It will be hard to say goodbye to my friends, the people that truly did care about me and were also angry about the medical abuse, the poisons and stigma that damaged me beyond repair. My body, mind and who I was as a person. It’s difficult to say “goodbye cruel world” to the people that actually did care.
I hope they will always remember the laughs, the stories, the connections. The realness and tears that were sometimes painful. I have been fortunate to have met some really special people in my life. Real people that were not afraid to take off their masks (not the COVID kind). Real people that allowed me to see them, and saw me as a fellow human and not a diagnosis or a code or product to be bought and sold. Thank you to my friends and my little family for showing me that love really does exist!
When I was 13, I took my parents to court for child abuse and “won.” I was placed in the foster care system and was told that teens are hard to place, that no one wants a teenager.
I felt like I was being compared to a product, an old pair of shoes that no one wanted.
I ended up in a group home for teenage girls. Because of my naivety, I was quickly separated from the other girls and kept in the basement. I was not as “street smart” as some of the girls that had been in the “system” for years. Even though this was a group home, the people that worked there were husband and wife. Foster mother and father.
They were abusive, and the abuse in this foster home was much worse than what I had survived in my birth family. After some time, one of the “street smart” girls called the Department of Children and Families and reported the couple. She spoke of verbal abuse and neglect, of the girls being left alone.
I was not being left alone as they had chosen me for sexual abuse. Abuse so horrific that many would find it difficult to believe. Once the couple realized they were being investigated, they left in the middle of the night, taking me with them. I rode in the back of a moving van and was taken out of state.
I was reported as a runaway.
When I was finally able to escape these monsters, I was 18 and a half. My body was sick, my mind broken and the light of being outside seemed too much. But I was able to get a room to rent and a job as a short order cook in a factory.
It was difficult for me to transition into society and adjust to life outside of that horrible foster home. I was shocked at how much of society was also broken. How people made fun of some of the establishments that had hurt me, and still participated or did nothing. People related their lives to movies I had never seen and it was difficult for me to fit in.
I had two children, six years apart, from two brief relationships. I loved being a mother and wanted to create something different with my daughters. A family built on trust and love. I surely wasn’t the “perfect mother,” but we had a bond and our goal was to treat each other with respect, compassion and love.
When my youngest was born, she had serious heath issues and she was frequently hospitalized. She stopped breathing often and required a monitor to alert me to begin CPR.
I began having severe panic attacks, health issues and insomnia.
I went to doctors and began getting diagnosed, “coded” and medicated.
Eventually I went to college and completed a degree in respiratory therapy. I got a job working with severely ill children in a nursing home and this really increased my symptoms. Many of these children had also experienced horrific child abuse. Most were on ventilators and feeding tubes and were unable to walk or talk. On average, one child per week passed away.
When the medication made me feel worse, I was sent for inpatient hospitalization to “adjust my medications.” I was coerced into agreeing that I was suicidal so insurance would pay, and then abused and tortured because I was “suicidal.” The hospital staff put me in isolation rooms, tied up with no clothes on to “keep me safe.” They gave me the wrong medications and threatened me if I didn’t take them.
The hospitals were such a shock to me. It’s sickening that our society allows humans that are hurting to be abused. To be tied up, locked up and treated like criminals for having side effects to the very medications they are there to have “adjusted.”
I moved and started a new job doing home care working with veterans. Many of my patients were on home oxygen. I later learned that many of my patients were in a paid drug study for PTSD. I remember my feelings of anger as I watched these people being shown uncut videos of the war and being given psychiatric drugs. Their families were affected negatively and some of my patients decided to end their lives. I was so angry at the audacity of calling their normal symptoms after horrific trauma a D I S O R D E R!
The medications I was given caused weight gain, and a host of physical disorders. Soon I was on so many medications I could barely think straight. I was poly-drugged on 5-6 psych medications at a time, shuffling through several antidepressants, anti-anxiety drugs, antipsychotics and mood stabilizers for THIRTY YEARS! Each one adding another layer to the stigma. Many people, even those that work in this broken system, do not realize the harm. Showing up in the ER with a broken toe and giving a list of these medications can almost guarantee distrust and stigmatized treatment.
I was also on over 20 other medications for the non-psychiatric symptoms and new diagnoses resulting from the medications.
When my daughters were 10 and 16, I was placed on hospice. I was diagnosed with terminal heart/lung disease from all the medications and was in a wheelchair and wearing diapers.
With no core family support, much responsibility fell on my daughters. Helping me bathe, changing diapers, cleaning the home, shopping, etc. Hospice was another broken system full of broken medical equipment and fake promises to help. My daughters even watched me get placed in a terrible nursing home, where I was even more overmedicated and neglected. I had to beg to get discharged. It’s difficult in nursing homes because they need a doctor to sign off on things and doctors do not come around often. I knew my daughters would have to help out more, however I was so traumatized by the terrible care, the shitty food and the neglect at the nursing home.
I was so overmedicated that I didn’t realize how many of my issues were caused by medications. Once both girls were adults, I decided that perhaps it was the medications that were making me sick.
I soon realized that there is no medical support to get off these poisons. I took it one pill at a time and slowly started tapering off.
Each pill had different levels of torturous side effects coming off. At the time I had more than 30 prescriptions to come off of. I also decided to change my diet and get out in nature more.
I looked better and people would compliment me. I was losing weight and was able to walk more and only use oxygen at night.
I felt worse, though. Worse and worse with each pill I was weaning from.
With that being said, I also enjoyed spending time with my daughters, my grandchildren and my friends. I was used to dissociating due to the child abuse and was able to remove myself from the pain and it seemed to make people more comfortable.
I had a couple of nice therapists, kind people but still trapped in the broken system of seeing me as a diagnostic code, a disorder, and insisting that this was the only way to healing. They had also learned to detach as part of their training. It hurt because I saw them as fellow human beings, yet they saw me as someone that needed fixing.
They were taught in a school so they didn’t see us as connected or the same. It was me with a disorder and them with a degree.
And I’d get attached to the kindness. I’m embarrassed about that. There’s plenty of real people around, trapped in these broken systems, and here I was getting attached to people that believed in this fuckery!
Sometimes my therapist would beg for me to go inpatient to make her more comfortable. She was worried about the symptoms I was having and we both never realized it was from the medications. I was lethargic, and almost lifeless.
One day while driving I got pulled over for suspected DUI. I was taken to the local jail and kept in a holding cell for 10 hours while being “processed.” This included blood tests to find out that I did not have alcohol or street drugs in my system. I only had my prescription medications, yet I still had to go to court a few weeks later. In court it was determined that I should not have driven until I realized how these prescriptions affected me, so my punishment was a restricted license for six months. I was only allowed to drive on Tuesdays and Thursdays to go to therapy.
I cannot find the words to describe the amount of anxiety I was having in the holding cell, where so many people were upset about their situation. The court hearings and the costs involved were ridiculous. My oldest daughter was in a school that she needed to be driven to, and a host of issues were created with the restricted drivers license.
It’s difficult to navigate the broken systems while taking all these medications and treatments. In the meantime I had a lot of health issues, unnecessary surgeries and tests, and my body paid the price.
When my kind therapist decided to retire, it was a reminder that I was just a code and a disorder. I had just been discharged from a month-long stay in the ICU for heart/lung issues. She shared that she felt terrible that she wasn’t able to give me more notice that she was leaving, but I was too sick. So, I found out a week before she moved to another state. When she left, I felt abandoned, a familiar feeling from my past, mixed with grief and loss.
I found another therapist right away because I was grieving from the loss of my kind therapist, someone I had really trusted and had a deep respect for. This grief was bringing up old griefs. I was angry, too, that I had fallen into this trap of getting attached to someone that wasn’t a real friend. Someone that was really kind and wanted to help, but was being paid. I felt like she was a “friend prostitute” and it hurt on so many levels.
This new therapist agreed that the system is broken so she wanted to really “fuck the insurance company.” She charged my insurance company for five days a week, 20 sessions a month, 240 sessions a year for four years. I didn’t care about that at all. I saw her about twice a week, and sometimes not at all if I was out of town, or sick, etc. She just billed no matter what.
I told her that I was weaning off of my medications and she decided she wanted to be a part of that. She was also on some medications and decided to stop hers cold turkey. This is when I really started noticing personality changes and abuse. She took me to bars and drank so much that the bartender threatened to call the police. Sometimes she would not show up to my appointments, but would threaten me if I didn’t show up. She gifted me with her old car when she bought a brand new one, thanks to charging insurance companies so much.
The gift of the car increased the abuse and she started to demand that I clean her bathroom at her office and do other chores during my “appointment.” Then she took me to different “alternative healing” places where her friends would do spiritual healings, astrology readings, past life readings, while abusing my body, mind and soul. The therapist and her friends took advantage of my abused child-like reactions to being ordered around, sexually abused and threatened. I was afraid to say no, to leave, even though they were hurting me.
In the meantime, I had to go to my primary doctor to get a refill for a prescription ointment for my lady parts for the scar tissue from the childhood sexual abuse. I had been using this ointment for years and suddenly it was denied by my insurance and I had to request a court hearing. Each step I took hurt and felt like torture—sitting too long, standing too long, all hurt like hell. It took a year for the court hearing which was done by telephone and it was finally approved.
This therapist told me that if I ever told anyone about the sexual abuse she would kill me, and she told me the exact way she was going to do it. She would text me pictures of the inside of my home, which she was never inside to my knowledge.
I went to my then psychiatric doctor and told her what was happening with this therapist. I knew I needed help, yet this doctor told me that I was recreating my past and I needed to see that. Also, that I couldn‘t come to my appointment and tell her this, she’d have to do something. I said, “Yes, I want you to do something!” She just gently put her hand on my shoulder and guided me towards the door.
One day I came to my appointment with the therapist and I was angry. I told her I was not cleaning her bathroom anymore, and that I would not be following her taper instructions because she was making me worse! She kicked me out, and I felt relief. I quickly made another appointment with a different therapist and started filling out the forms to report the previous one to her licensing board.
The new therapist was kind, and even though she had never heard of anyone being abused by a therapist, she seemed to believe me. It took four long years of going to court hearings. There was insurance fraud, ethical violations, and medical malpractice. Three separate lawsuits. The process was just more fuckery and although my new therapist was kind and supportive and came to each and every court hearing, she never said anything while I was being raked over the coals by this broken legal system.
In the end, my current therapist did write a letter to the state attorney and the licensing board expressing how they had re-abused me, and neither one ever really responded.
I’d do it all over again, too, because even though the legal system is rigged (in my opinion) against the common folk, I was doing this for myself and my healing. I was able to prove the abuse, by my therapist and other providers. I was able to have a successful claim against her malpractice insurance and I was able to ensure that she would never be able to bill insurance or have a license in my state.
The abusive therapist had stolen enough money to hire a good attorney and she was smart enough to relinquish her license days before she would have had it taken away, and she had enough money to pay off her probation early.
The malpractice insurance that every therapist is required to pay into has a clause that they can pay out less money if the provider intentionally hurts a patient. What kind of fuckery is that??
The new therapist, my current therapist, is kind. Even with all the court hearings, I still continued my tapering of medications, although at a much slower rate. I never really fully understood the withdrawal symptoms and even though she was kind, she didn’t have the time to look into it either. She’d remind me that she was not a doctor—something taught in her training, to not get involved with medications.
She is supportive and open-minded and kind, and she listened to me as I shared about these broken systems—how these broken systems abused me since childhood and they hurt all of us common folk. She agrees with me, yet she still works in the industry and in some ways knowing that hurts me. I don’t want this kind person to be part of a system that hurt me so much. She says she can see the fuckery as she hides (in my opinion) behind the letters after her name. I understand that she needs to support herself, however my brain cannot accept that she chooses to continue to work in this field and it has affected our trust and communication.
In June of 2021 I celebrated coming off all medications. I was rather proud of myself, even though I felt like crap. The withdrawal symptoms were reminders to me that I was a sub-human, unworthy of a life worth living. There are no words to describe these horrible symptoms. My friends didn’t understand, and I seemed to be starting to lose who I was.
Two months after my “celebration,” the akathisia kicked in and it was pure torture. The burning in my brain, the feeling of every organ and body part inflamed and on fire was shocking. No one could see it, and people just spoke to me in typical conversation and my brain could not adapt.
The doctors are totally useless. They can either prescribe drugs or not, nothing else. I now pay $150, a rather large chunk of my disability income, to get prescriptions that are essentially hurting me. The $150 does not include the provider doing any research on weaning, tapering, etc.
I was forced to reinstate a few of the psych medications in small doses to bring down the symptoms of the damage to my brain. I later learned that this reinstatement caused my brain to “kindle” and the symptoms worsened. Kindling is a neurological condition resulting from repeated withdrawal episodes. The central nervous system becomes hyper-sensitized and hyper excitable. Each subsequent withdrawal leads to more severe withdrawal symptoms than the previous. I feel that some of these designer chemicals intentionally make it impossible to totally wean off, keeping the customers prisoners forever.
I finally realized that the severe withdrawal symptoms and akathisia mixed with the heart/lung disease are all medication injury. Iatrogenic. I am ill and it is caused by modern medicine. I have a lot of symptoms, yet I am still able to dissociate and appear rather unscathed. It makes it difficult for people that care about me to understand that I am suffering severely, that I don’t want any more treatments. I don’t want to be a part of the broken systems any longer. I don’t want to risk being put in another nursing home or a psych hospital and having my rights as a human taken away. I only wish to have autonomy over my own body. Like Antonio Negri said, “Why do you accept being treated like an inmate?”
Why do we accept treating people like prisoners? This is an important question to ask as a society. Why do we allow this to happen in psych hospitals, in nursing homes, in the legal system, and to foster children? Why do we accept it?
No one can see my reality. Many of these symptoms are invisible. These symptoms are neurological, electrical, painful, and torturous. While my brain is burning it cannot understand someone asking me if I want to go get pizza for dinner. My brain keeps scanning to make sense of other people’s responses to life as my body is feeling like it’s been doused with battery acid and lit on fire!
People see how I am reacting emotionally and maybe even physically. My body is losing its motor skills; frequent broken bones, having seizures, unable to focus, etc.
I don’t feel a part of this world anymore. I don’t have the desire to engage or accept what I would have to go through just to exist in this private hellish prison.
I do not want to contribute to all the broken systems that are currently in place for what would be my final days. I don’t want my final days filled with insurance schemes. I don’t want to feel like a society castoff or a foster kid nobody wants.
I want my final days to be about the autonomy of my own body and mind. I would like dignity and respect and to be with people that really care about me. I would like to feel supported by my family, my friends and my community. I would like to be seen as a human being that deserves to be loved and cared for.
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.