The Undervalued Potential of Living Without Psychiatric Drugs

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I had never believed in evil until I met my psychiatric nurse.

By evil, I do not mean malevolent, or sociopathic. We have all been evil at one or various points in our lives. Evil, to me, simply means one is wrong, and in a way that, through their actions, is causing harm. When this happens, the responsibility of others is needed. People with a greater awareness have to step in, or somehow promote healthy alternatives, because the person is not going to change on their own.

What I seek is to is make a contribution to that larger awareness of psychiatry, growing in the world, by telling my story the way I see it.

I was 17 when I had my first psychotic episode. Since then, I have been in several different clinics, and on various antipsychotic drugs, for the past six and a half years.

In 2018, I had my second psychotic episode. I became psychotic after cutting myself off from a drug called risperidone in a matter of days. My second psychosis was worse than the first one. My psychiatric nurse told me that they had taken my desire to be creative into consideration and put me on Abilify, which would maintain that part of myself for the most part. The 300 mg per month injection of Abilify was given to me with my psychiatric nurse’s statement that it was a “light,” dose. Four hundred was average, or even 500, for many people.

My nurse and others talked about giving me a lighter than usual treatment as if it was a strain for them to adjust their perspective. “We want you to be as close as possible to yourself,” said my nurse. In my experience, close enough for them was very far away.

The new medication, Abilify, started giving me digestive problems. I threw up my breakfast in the mornings, sometimes more than once. I would be unable to eat for long periods of time, and starve for the majority of the day. It was interfering with my life on a daily basis. I couldn’t read because I was hungry all the time. I couldn’t draw sometimes, because it made my hands feel funny from the amount of energy I was using up. I was filled with constant fatigue that made me have to rest for hours, and I went to bed hungry.

My psychiatric nurse looked at me, as I sat in the chair in her office as I did every month. She explained how we had tried to implement an eating plan; specific times I could eat, with specific meals prepared. “I know eating has been really a challenge for you,” she said.

I was legally bound to the medication for a period of six months. I was on a form. If I didn’t show up to my appointments or refused the injection, or didn’t show up at the correct time, police officers, given my address by the hospital, would come to my house and escort me. “They’ll ask you why you don’t want to go to your appointment and you might end up back in the hospital,” my nurse told me. Luckily I understood the importance of being rational with these people. I wasn’t going to get my way by even voicing my opinion, let alone freaking out and smashing things and yelling at them, which was what I deeply wanted to do.

My psychiatric nurse was the one who handed me a program with the headline along the lines of “Studies Show Those Suffering from Schizophrenia Experience 15-20 Year Lower Life Expectancy.” When I saw it, my stomach churned. The article in its neat print highlighted how cardiovascular disease was very prominent for some unknown, unspecified reason in people with schizophrenia. It’s the medication, obviously. It slows down the immune system and kind of wrecks it. People gain so much weight, they literally don’t recognize themselves anymore.

It was my psychiatric nurse who saw me wanting to take a year off school to focus on my mental health as a problem. It was my psychiatric nurse who said I should know better than to confess my love to someone. And it was she who said she was listening to her gut instinct, which told her for safety reasons, because she didn’t want my life to fall apart, they should raise my dose to a 400 mg injection a month. “I don’t want you…to walk out of here after three years thinking you could have done better,” she told me, which I thought was a weird answer as to why I should be more medicated. She said I was still having “some turmoil.”

I was 20, living on my own in a basement apartment for the first time. In the winter, a friend of mine commit suicide after tapering on her own from antipsychotics, and I was assaulted by a stranger several days later. My so-called turmoil was a genuine reaction to things I was facing.

I thought back, at the mention of turmoil, to the peace I experienced when left alone as a teenager, when I had the chance to really get to know and work through all my negative day-to-day experiences. Things like sorrow and stress and even fear were sacred to me. They were generally needed responses to very real conflict. They gave me insight about why and how I was responding to certain things in my life that were not OK, and I could create good quality art and writing from them. I’d draw for hours in this macabre Tim Burton style.

I owned and made the best of “my turmoil.” It was my intuition. It was my voice, and when I followed it, beautiful things took place and I was able to feel better in the long-run. By working from and with my darker sides, I gained insight, strength, and a balanced life.

The emotional blunting caused by antipsychotics is what has fueled, more than anything else, my sense that my treatment is immoral and inhumane. I have never been compliant in my heart.

To give those unfamiliar with this experience a better picture, imagine the rest of your life being nothing more than a boring video game, a simulation of real life. One where you can’t feel truly emotionally invested on any satisfactory level. One where, most of the time, you learn to forget and to tune out the vicious part of you saying this is all wrong, because your experience is 24/7 and there is literally nothing you can do to get out of it, besides try to taper off. That’s what taking medication is like.

I told my psychiatric nurse, sitting in her office again after receiving my injection, that my entire life felt like the equivalent of being in a waiting room, eating a sandwich. She smiled and laughed, for a second. Then she said, “Well. Some people do live their entire lives that way. Maybe, taking into account your life now and everything that you’ve been through, I’m going to say, Ruby…maybe that’s as good as it gets.” She told me her father had naturally been one of those people and she said, “And you know what, they’re content.”

I felt like a joke.

My life has to have meaning. In my experience, psychiatric drugs are able to take that away. I talked to my psychiatric team (the nurse and a psychiatrist) constantly about this, in the beginning. I asked if I could be put on a lower dose. They were very, very fearful of me getting sick, even though I was taking their prescribed dose. They said lower doses were impossible, even though the product monograph describes a lower dose method. They claimed I had to be on 300 mg or the drug wouldn’t be effective.

Eventually, I just stopped talking in an honest way to my psychiatric team. I stopped communicating any kind of open statements about how I felt, and was able to smile and chit-chat and make polite conversation. I told them nothing was wrong. “Oh yeah, everything’s going well. I get a bit stressed, but I know I have to manage that.”

For a fleeting moment, I was entertaining the possibility of someday working as a peer support worker. I asked a question about what kind of person they looked for. My nurse said the kind of person they look for in a peer support worker is someone who’s accepting of treatment and the kind of life they have to live. That killed it for me.

My psychiatric nurse was so polite and friendly, saying things in an uplifting way that made me feel crestfallen. It got to the point where I was constantly thinking there was something wrong with me because my inner voice wasn’t nice to her in return. I lacked confidence in myself for a long time. Because I couldn’t trust my own perspective, I felt she was a positive contribution to my life. I felt guilty for thinking otherwise. I couldn’t listen to my own instincts, and I assumed her judgment was better.

In that environment of the out-patient mental health clinic, professionals take note of anything except exclusive rationality; everything the least bit quirky or just authentic to a specific individual is viewed with skepticism, if not as a symptom.

The last winter I was at that clinic, we had a meeting. I had been voicing my continued desire to wean off the medication, or at least try a lower dose. For the meeting, both my parents were in the room, as well as an occupational therapist, my psychiatrist, and my psychiatric nurse. I felt crowded out by them all being there at once. I felt overpowered before anyone even said anything.

I came in that day with the hopes that I’d make some half-hearted attempt to tell them how I was suicidal every three months, how this suffering caused by no emotional fulfillment in life was something I just couldn’t deal with. But the presence of all of them quietly sitting there made me feel I had to lie, to protect myself rather than argue my case.

“I get suicidal from the emotional blunting,” I said. I probably had a desperate look on my face. “But sometimes I can try to read and focus on things I like. And if I really try, it feels…a little bit better.”

One of them sighed with relief. They were all so happy to hear it. They concluded the meeting was done, and that it was a success. They needed no further reassurance that everything was fine. They needed no solutions.

My dad told me later that I had folded. I had let myself be weakened, like a mouse. “If someone is suicidal every three months, there’s a real problem,” he said.

I did ask. Every so often. About weaning off or being on less. I did try.

Now, I’ve been able to live on a slightly reduced dose. I am working towards getting off altogether.

Things are more workable in general in my life, though not satisfactory by any means. I have some minor solutions that make the side-effects less dominant than they would be otherwise. For the past year I’ve been taking supplements, some of which increase dopamine, which the medication is designed to block, and some that boost cognitive functioning in general. These include Gaba, Empower Plus, L Tyrosine, and several others. They do not completely give me a feeling of concrete normalcy, but I have more energy and feel strong on some days.

I am in a full-time university creative writing program, taking five online lecture courses during the pandemic. I am getting a lot out of it. I sometimes like where I am, in this position: working myself out of a situation where the only other option was to accept the terrible fate others had already accepted for me. I knew for a while, and now believe on a deeper level, there are other options.

In reality, the anger is a painful thing I have to censor myself from. When I think about the lack of clear paths out of this, the need for some sort of justice, and a real justice, consumes me to the point where it’s unbearable. The only thing I can think about that keeps me going, is that yes, I am now on a lower dose, and functioning better than before as a result. That means there is hope for weaning off completely, which is my goal over the next year or so.

My psychiatric nurse and numerous other workers in the system took my life, when I was in pieces, the first time I had a psychotic episode, and rather than help, they made it so I maybe could never be properly redeemed.

Yes, I had my initial psychosis, when I was a teenager, coming back from boarding school. I broke down sobbing, due to external events that were cataclysmic in my life. I was mourning something. And yes, there was mania, and yes, there were things abnormal about it that I couldn’t control.

But compared to how the last six years of my life have been, compared to how intense the drugs are and how grueling the side-effects, let alone when I tried to come off medication on my own and crashed, my first psychosis at 17, I admit, was honestly not that bad.

I am convinced that if I had been given maybe a year or two off school, to live with my aunt and uncle in their nice, big house close to the woods, I would have sorted myself out and been able to recover to a much higher level than I am right now.

If I had maybe gone for walks every day, if I had maybe been given a productive form of therapy by someone who could really appreciate the depths of suffering and what they can turn a person into. If I had started taking high doses of supplements back then, made a lot of time for myself and endured rigorous daily exercise. I think I could have been out of the illness after a short enough span of time.

I think that was what needed to happen, and could have, if others and myself included had just taken a breath, and been in the right frame of mind to really assess where we were headed, not just where we were right then.

The view of psychiatrists, in my experience, does not take healing into account. Professionals who put anyone, but especially young people, on these drugs and expect them to take them for life, without taking responsibility for things like side effects and lower quality of experience, are just not in a compassionate place. They are causing harm to society.

I believe psychiatry is no more ultimately about being sane than it is about treating people with empathy, understanding and respect. My psychiatric nurse was by far the worst person I’ve encountered, though most people who have ever been involved with my care caused me to feel greatly misunderstood.

I think real evil, according to its nature, is never open about the fact that it’s evil. It masquerades as the solution. It masquerades as something no one should have a choice about because it’s just that morally good. And I think people who are evil genuinely believe that they are doing good. That’s what makes them so difficult to reason with, in the end. They can say no to you a hundred times. Everything you ask for, they can tell you, you don’t have a right to. But you can’t say no to them.

For anyone reading this who is on psychiatric drugs, I hope you can find your own personal courage and be able to recognize what sits right with you and what doesn’t. Believe in yourself and your perspective. Keep searching for people who can acknowledge your situation when you say it doesn’t work for you. You deserve a happy life, and you deserve support from those rare few who are educated and grounded enough to support you.

***

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.

23 COMMENTS

  1. Psychiatric drugs-Whoever you are- Whatever you want to do-However you want to do it Etc. Psychiatric Drugs steal this from you. Psychiatric Drugs steal your mind, body, your soul, your spirit. They basically mess up your brain to the point that you may not even be able to legally sign your name onto a check or other document. They are cruel abuse and they disable, debilitate, maim, damage and kill. I am glad that the author of this article can see this at such a young age, before it really gets out of control. I wish the author well and all who wish to escape from this hellish evil of psychiatric drugs. If there is ever a hell on earth, it is being under the influence of psychiatric drugs. Thank you.

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  2. Well done, Ruby! I say this because you have such a clearly defined holistic view of yourself and dare to frame your experiences from your own perspective. You understand this on a level that took me decades to get to. I have very high hopes for your future. The only thing I would add to this is a suggestion that you find your tribe, so to speak. What I mean by that is I suggest you make an active effort to identify and associate yourself with people who will help guide you through the experiences that get you targeted for psychiatric treatment. Two episodes of psychosis suggests that you would be wise to prepare for the next. First, you want to be ready for the creative potential and to mitigate the destruction. Second, you want to have people around who will help you recognize this state approaching so that you can take steps to prevent being identified as needing psychiatric intervention. I will caution that the time around when you stop taking the APs entirely may be very difficult. Anything you can do beforehand to mitigate any kind of rebound psychosis or disturbance will set you up for getting through whatever does come. There are peer supports that don’t operate by the compliance method, don’t validate the diagnoses and the drugs as the only path forward. Learn about these before you need their help. Peer respite, hearing voices groups, etc.

    No matter what, hold onto that innate sense of who you are. She is strong and will guide you well if you continue to listen to her wisdom.

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  3. Dear Ruby,

    Like you I am schizophrenic and although I prefer for myself not to believe people are evil, just “lost”, I certainly do believe nobody “lost”, should ever inflict medication on other people. You are a very fine and accomplished writer. That is so strong and undaunted with you even on pills. I am in awe of your creativity.

    I can only EVER talk from my OWN experience, so I will say that for me, and it may be quite the opposite for someone different, Abilify was an excruciating drug. I recognize exactly nearly all the side effects you mention and I can add more, though bodies are not made in factories and so everyone’s body will have quirky side effects. Like you I was on maximum dose of that specific drug, amongst many others, for about five years. I eventually quit and it has been really, really tough living with my schizophrenia at times but getting out of what I was dosed on has been the absolute making of me. What people do not understand is the warm, wise person you are gets utterly decimated by the side effects. This gives a false perception of “the schizophrenic” as being an idiot who cannot make their own “free choices”. Once a schizophrenic comes off their pills people are so aghast that the schizophrenic person is intelligent after all that they think it must have been a misdiagnosis, which it is not. The cruel irony is that removal of faulty treatment does not equate with a cure of schizophrenia, it only gets rid of the awful drug effects. So what can then occur is the schizophrenic person is left with little actual help AT ALL. And since they now have awakened from drugdom, and sound clever and gifted, they get told to take their still occuring hallucinations and delusions and voices and fend for themselves. I would ask any non schizophrenic person to consider how they would feel serving burgers to a table of diners if they heard voices telling them to run? Or have the delusion the diners are being controlled by invisible aliens?
    The schizophrenia sufferer must have the “free choice” of optional proper help, only if they need it, and because merely coming of a drug does not vanish away the original predicaments of symptoms, and because the schizophrenic person changes to being more alert without drugs, care folks need to know that the schizophrenic person both may at times feel they need some kind of optional asked for voluntary support AND is smart enough to design how their support should be. I believe Soteria houses understand that philosophy.

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  4. Ruby, most awesome article.
    Try to keep in mind that the nurse is not some kind of “normal”, and there is evidence because
    she pretends to know you, all of you. She assumes and how can anyone make assumptions and drug someone
    with drugs that harm. And yes it is harmful to get rid of all the things that were working for you.

    Sure you have some things that cause you problems but a normal person looks at if the cure is worse than the state.

    Often people are not even left with the sense that the drugs are doing something very ABNORMAL.

    No it’s absolutely not normal to be in a stupor at age 60 and that IS what psychiatry is quite okay with.
    In fact, they pretend to the public that the drug damage IS the mental “disease”.
    But right now your brain is working quite well, telling you that these drugs are not normal nor are they making you “normal”.

    Just because psychiatry does not know what to do, or does not know where the problems lie, does not give them the right to kill, maim or alter people into stupors.

    And besides those harms, the harm of sitting in front of those “normals” and be talked to and about as if the person in front of them is a faulty car engine, it’s beyond disgusting.

    They can’t see past the tiny little part that is the problem and there are billions of parts that make up you, and continue to make up you.

    I’m really sorry the power imbalance was in full action.

    I second Kindred in saying that please do find a community where you can perhaps go to when you feel unsafe and vulnerable.

    I think it would be great if there could be outings, jobs, gardening, canoe trips, with those communities.
    To be able to participate with others and interact in safe places.

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  5. “I think real evil, according to its nature, is never open about the fact that it’s evil. It masquerades as the solution. It masquerades as something no one should have a choice about because it’s just that morally good. And I think people who are evil genuinely believe that they are doing good. That’s what makes them so difficult to reason with, in the end.”

    “Of all tyrannies, a tyranny sincerely exercised for the good of its victims may be the most oppressive. It would be better to live under robber barons than under omnipotent moral busybodies. The robber baron’s cruelty may sometimes sleep, his cupidity may at some point be satiated; but those who torment us for our own good will torment us without end for they do so with the approval of their own conscience.” – quote by C. S. Lewis

    As one who has been researching into the systemic crimes of the “mental health” industry, and other industries, for almost as long as you’ve been alive, Ruby. I will say I believe the real “evil” is the fiscally irresponsible globalist bankers, who’ve funded the scientific fraud based pharmaceutical industry, plus miseducated, and bribed the medical workers in the universities, hospitals, and beyond.

    Those bankers would be the “robber barons” in C. S. Lewis’ quote. And the miseducated, bribed, and misinformed medical community are the “omnipotent moral busy bodies.” As are also, unfortunately, many of the mainstream pastors, since they’ve “partnered” with the “mental health” industry.

    As to the “schizophrenia” drugs, the antipsychotics / neuroleptics; they can create the positive symptoms of “schizophrenia,” via anticholinergic toxidrome. They can also create the negative symptoms of “schizophrenia,” via neuroleptic induced deficit syndrome.

    https://en.wikipedia.org/wiki/Toxidrome
    https://en.wikipedia.org/wiki/Neuroleptic-induced_deficit_syndrome

    But as kindredspirit mentioned, withdrawal from the antipsychotics can also create a drug withdrawal induced “super sensitivity manic psychosis.” So do be forewarned, as you are weaned from those drugs.

    Thank you so much for sharing your story, Ruby. You are a very strong lady. I pray, you are able to be weaned off the antipsychotics / neuroleptics, in a safe manner. I believe going very slowly is likely the key (perhaps over years). But please know in your heart and mind, that being weaned from the antipsychotics/neuroleptics is totally possible. I managed to convince a psychiatrist to do it so, so can you. However, it may take changing doctors, or even moving out of state, as it did in my case.

    God bless you in your healing journey, I know you can do it. Keep good journal notes, and eventually pick up your medical records, so you may later tell your story. But I’ll tell you, if you do deal with a drug withdrawal induced “super sensitivity manic psychosis,” which you will not necessarily recognize when it happens. But if you’re feeling too good, after being weaned from the antipsychotics, turn on your phone recorder, and verbally record your experience. Because it’s hard to keep good journal notes, when you’re manic.

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  6. I’ve been reflecting on your story for a couple days Ruby, feeling your your struggle in time, going forward in life so as to authentically articulate your potential in this world, all the while your foundation to do has been complicated by experiences that neither add up nor offer a clear path forward. I can’t comment on the medication challenges you face-though I do find Kindredspirit’s comments quite wise, but your thinking and long term goals feel very promising and achievable to me. But what I can say is that it’s well documented that initial psychotic episodes often occur when young people first leave home, and especially when other difficult experiences occur in tow. I only mention this to suggest what (might be) triggered during this very stressful developmental leap is more a physiological response to an earlier miscarried or traumatized developmental phase, than a “permanent” body/brain problem, and thus, “fixable”! Though I am of the belief that breakdowns “can” be a great gift to us, especially creative people like you Ruby. As for the Nurse Ratchet’s of the world… never underestimate the hollow intentions of small minded people with a little bit of power, nothing threatens them more than courageous awakening people like you Ruby, of which your beautifully written story here so clearly shows you to be!

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  7. Ruby, I can relate so much to your experience. Thank you for describing everything in such a beautiful, touching and thought-provoking way! (I was not at all surprised when I read that you are now in a creative writing program). And you are so right about evil: evil can so often mask as good. I guess that most psychiatrists are genuinely convinced that they are helping their patients, that the patients have biologically-based diseases and that patients who are “uncompliant” simply don’t know what is good for them.

    I was put on Abilify in 2012, after a psychotic episode. I have experienced the emotional blunting you mention, as well as many other side effects, and I felt that my life had become sad and almost meaningless. I sometimes even felt suicidal, though it had never happened to me before. I often felt that my life, my real life, had ended, and that I was no longer myself.

    Psychiatrists did not even want to reduce my dose – I was getting the standard one, though I am less than 5’2 tall. But just like you I felt that I did not want to “accept the terrible fate others had already accepted for me” – to spend years and maybe even the rest of my life without feeling truly alive, without even being able to have real conversations with my family members (Abilify caused a horrifying emptiness in my mind, as if I had literally nothing to say to others).

    Fortunately I was able to come off Abilify after spending more than a month on it. I have never told psychiatrists about it and simply stopped registering for psychiatric appointments. I have never had another psychosis. After losing my job in 2018 and a period of unemployment I felt forced to get involved again with the psychiatric system in order to be able to apply for a disability pension.

    I feel uneasy because of this involvement with the system, but I feel that I have no other choice. I am not taking the prescribed neuroleptics, but I can’t be open about it. Anyway, I was receiving the disability pension only for a year and I have now been fighting for many months to get it again (my case is now in a court). But even though I am poor and forced to rely on my mum’s financial help and on my various small freelance jobs, I am very happy and I feel free.

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  8. My apologies for not being able to respond to every comment, you guys are great and you make the world outside feel a little bit closer. Many hugs and love and much thanks. Keep telling your beautiful stories, and keeping the dream alive!

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  9. Hi Ruby! I’m really glad I came across your story. I too, have had horrible experiences with mental health medicine. In my story, my adhd medicine was causing bipolar and schizophrenia symptoms. Without mental health medicine my only diagnosis is adhd. I have been heavily medicated since I was a child. I am now 31. Been off medicine for almost 4 months and I am symptom free. (Adhd is pretty bad though but manageable).my husband literally apologized to me for not believing that I would be better without medicine. My sister who I see every day didn’t even know I stopped taking all my meds. She thought I only stopped my adhd medicine. And my therapist said he’s never seen me this stable before. I’m doing great off my meds and I hope yours will be successful too!! I am a little sad that the tar dive dyskenesia never want away. Google says it’s permanent. Im actually in the process of writing an autobiography so that people can see how awful mental health medicine is. It caused my brothers death and it almost caused mine.

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