Editor’s Note: This article originally appeared on our affiliate site, Mad in Finland. In it, a mental health worker and former long-term patient describes the aspects of treatment and life experiences that helped with recovery, as well as which aspects hindered recovery.
I have spent several years of my life in various psychiatric institutions and have come to be seen as a chronic patient whose chances of recovery have not been considered very high. However, the predictions made at that time have turned out to be wrong. In this article, I will concretely list the things that have supported my recovery and those that have made it difficult.
Psychoeducation—did not help
According to Wikipedia, psychoeducation is “an evidence-based therapeutic intervention for patients and their loved ones that provides information and support to better understand and cope with illness.” The importance of psychoeducation is emphasized today in all current treatment recommendations and treatment paths related to mental health. In practice, this fancy term means that a person is told about the disease he is seen to have, its symptoms, prognosis, and good treatment.
“You now have this disease, which you have to live with and make sure that you take these medicines and live a regular life, and yes, over the years you will learn to live with these symptoms.” Somehow the most important features of this psychoeducation belonged to me. And in my mind I thought: “Bullshit. I know myself better. I’m not sick, I don’t need medicine, I can get through this, at some point this will become easier.” Of course, you couldn’t say these thoughts out loud; that would have been insensitivity to the disease and the basis for ever more psychoeducation.
It was that dark moment when I believed this psychoeducation, when it really seemed that “I will never survive this” that death was close.
Dealing with trauma—helped
I would never have recovered if I hadn’t been able to talk through my childhood experiences in a safe caregiving relationship. It wasn’t trauma psychotherapy and it didn’t last for years. The most important thing was to be able to tell what had happened and at the same time free myself from the thought that the events were my own fault. If someone had given “psychoeducation” in advance, telling me that such difficult childhood experiences actually cause permanent damage, that processing them requires several years of intensive psychotherapy, and that one way or another the symptoms have to last for the rest of my life, I certainly wouldn’t have been able to recover. I would have surely believed that it is so, and given up.
Medication—did not help
I was prescribed several different medications. They were started, changed, added, subtracted, and given by force. The neuroleptics caused excruciating fatigue that was completely impossible to fight against. Of course, anxiety is not felt and the patient in the ward is easy to treat if he sleeps 20 hours a day, but is that also real life or being treated? And after all the time spent on medication, the feelings have been down there the whole time, waiting and rising to be confronted.
I’ve never been on ADHD medication, which many people today find helpful. I can’t help but remember how similar it was about 10 years ago, when sales of SSRIs really started to rise. In the same chilling way, the newspapers were filled with stories about how “help and understanding had finally been found after the depression diagnosis and medication.” A big bubble has started to burst around SSRIs. I think we’re going to experience something similar in a few years with ADHD drugs: the longer we get follow-ups, the smaller the benefits start to look, the bigger the harms, the bigger the profits for the drug companies.
Diagnosis—did not help
I found no self-understanding or experience of relief from the psychiatric diagnoses I received over the years. It was certainly not that the diagnoses were wrong, but that all of them were and are equally empty. They were strange: some “symptoms” from each list fit and some didn’t. You could find a description of your own experience in one of the expressions, but not in another. In any case, I had already found many better and more appropriate words for my own experiences in poems and novels and had written them myself. When defining the diagnoses, no one seemed to care about the causes of the experiences or told of how the symptoms could be cured.
“I feel so bad that I can’t take it anymore.” That was the thing and the problem and the experience, and there is no such diagnosis.
Diagnoses bundle different things considered as symptoms in different combinations together and create different names for these combinations. What explanation could they give? For the “merits” of the psychosis diagnosis, of course, I received various benefits and admission to ward treatment, I became, as it were, a real patient in the psychiatric system. If a person’s own experience were listened to and understood as such, there would be no need for such instrumental values attached to diagnoses.
In recovery, it was necessary to let go of these diagnoses and the definitions they gave. I think I washed them off. I refused to think of myself, my experiences or my feelings as “sick,” such terms were not allowed to be associated with me anymore. It was a big step.
Connection with others—helped
In some moments, I found a connection with some people in the care system. Rarely did I hear psychoeducation or advice about my life. Never when I got an instinct of the other party’s disgust, boredom, and cynicism towards myself and my “difficult symptoms.” But there were indeed some good moments when I could experience acceptance, understanding, safety, and presence. Those moments and experiences were really valuable in my mind. However, I think that in these situations the other person never understood how important those moments were for me, what meaning they had for me. I had come to look for them in the psychiatric care system, and you would imagine that you could get them wholesale, but they were very rare.
In the end, however, what opened up a new kind of life the most was finding contact with people outside the care system. At last I qualified, at last I could be equal with others, at last I had a place among some others.
Threats, blackmail, subjugation—did not help
“Now you take this medicine or it will be forcibly injected!” “Now you’re going to isolation if you don’t stop that!” “Your care ends there if you cut yourself, and I don’t care where you go from here!” “Yes, I can get those men from the department to pick you up, and then think!” “You could go home and continue that game!” Those are what the staff representative said—it didn’t help.
Guts, questioning, own goals—helped
In the psychiatric treatment system, one often had to believe oneself and one’s own feelings more than what kind of definitions, predictions, or interpretations one could hear about one’s self. For example, I knew and decided that I would survive high school, even though I heard “you probably won’t be allowed to go to that high school.” I also decided by myself and in my right mind which members of the nursing staff I would talk to about my innermost feelings and issues and who I wouldn’t. I knew and understood and saw that some of the nurses treated some patients with disdain, indifference, and provocation, and this was not “distorted thinking caused by the disease,” although, of course, it was interpreted as such.
I decided that one day I would still recover and live a normal life, even though I had become seen as a long-term patient, for whom there would not be much trouble in the future.
In addition to the diagnoses, it was also necessary to give up the psychiatric treatment system, and the idea that I need something from that system, that I belong there.
I am taken aback by the approach of the psychoeducation in your case, as it seems to have been rather oppressive. Generally, psychoeducation is understood to involve the dissemination of information, where the therapist imparts knowledge about various psychological states that are helpful to “educate” the client. For example, explaining that experiencing a flashback signifies a moment of re-experiencing of past events in the present body. However, the tactics employed in your situation appear to have been more akin to coercion and indoctrination, which is concerning given that most mental health and trauma conditions do not conform to the traditional definition of diseases.
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Thanks for sharing. My story is similar. I did have a brief psychotic incident and then I worked in an old asylum in London England from 1978 to 1982 as a student psychiatric nurses..
Education
If the goal is to make patients better then the Education should be based on your story or others like it. In fact they should all be compiled for the staff and patients to read. The goal of education is to make people more able not more compliant ( the goal of brain washing).
Trauma.
There is an old adage “It is not what happens to you but how you respond that defines you” In other words while you cannot change the past you can change your mind and your attitude to what happened in the past. All therapists should know this and this is why therapy can work.
Medication
I was fortunate that I was only prescribed medication to help me sleep which was what I needed. It should be noted that modern medications were originally approved to facilitate treatment and not as a treatment.
Diagnosis
My experience taught me that you cannot understand another if you you are obsessed with what is wrong with them. If you understand them then you can know what is wrong with them. Understanding starts with non-judgemental listening.
Connecting with people.
I finally found a group to connect with. A group in another country and with no connection to psychiatry. It is heartening to hear that you also found a group.
Guts
Take ownership of who and what you are. Don’t let them wear you down. This is me and if you don’t like it tough.
Help.
One thing that did help me was having regression explained to me. It would be great if all therapy session ended with the therapist explaining and getting patients attention off the past.
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“Understanding starts with non-judgmental listening.”
This is true. It’s also the opposite of psychiatry and its accompanying “mental health” system — and is the reason I think everyone should avoid it.
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What are the standards for “evidence based”
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I remember the psychoeducation that came with the borderline dx. Man, it was bleak. It seems as if the whole idea of the message was to make me feel so desperate and scared that I’d do whatever they told me to do…which I did, for a while, until the things they were telling me to do became so obviously ridiculous (for example, get more ECT, when the first round of ECT had disabled me).
The psychoeducation included things like:
* 10% of all people with borderline commit suicide.
* There is no drug for borderline, but there *are* drugs to treat the symptoms. This logic led to me being prescribed a cocktail of drugs–antidepressant, anti-psychotic, mood stabilizer. The type and dosage was always changing but it was always a combination of drugs.
* BPD has many comorbidities. These include depression, bipolar, PTSD, OCD, autoimmune disorders like fibromyalgia, and substance use disorder. The more comorbidities a BPD patient has, the less hope they have for recovery.
* BPD patients don’t get better without intensive treatment, and BPD patients are notorious for non-compliance and for dropping out of treatment (“So remember, do what we say or you’ll never get well. You might not get well anyway but if you drop out of treatment, there’s no chance you’ll get well.”)
* Most BPD patients have trauma histories, but most BPD patients aren’t stable enough to tolerate trauma therapy. The solution: get used to practicing crisis skills like sticking your face in ice water.
* Borderline usually “burns out” in middle age, but by that point patients won’t have much to live for since they probably never succeeded at anything and drove everyone away. I think it just meant we stop showing up in ERs so often.
There were more…those are just off the top of my head. Looking back, I think they wanted us to feel hopeless.
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I am a clinician with five decades of experience. Care requires humanization and capitalizes on the therapeutic alliance. None of us are just carbon, monetary or digital units. The approach must be biopsychosocial in best practice.
Rich, MSW
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I have been diagnosed BP and fully expect dx’s of BPD and NPD shortly. (I know they are heading there, so I’m going to bring it up myself.) I’ve already collected ADHD and PTSD dx’s in the past year. I feel unbelievably overpathologized. I have very mixed feelings about psychoeducation. I went in full-steam initially. Now I’m someone who is *acutely* aware of how broken and unlovable they are and how no behavioral health worker will trust what I say.
I honestly believe all “personality disorders” are actually “identity disorders.” What would help me the most is to build a sense of self again somehow. But psychiatry seems to be focusing on my identifying as someone with specific labels and poor prognosis—hardly the stuff recoveries are made from.
Of course, if I just went into an appointment and said all that:
1. I’m too sick to make serious suggestions about labeling within psychiatry–I’m just being grandiose.
2. I should just follow clinical advice and not be difficult. Because BPD.
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“Now I’m someone who is *acutely* aware of how broken and unlovable they are and how no behavioral health worker will trust what I say.”
I spent years in the system with these same feelings — you describe it very well.
By the time I left the system after decades of investment in “getting help”/”getting better”…actually, it was more like I was spit out of the system (I wish I could say I left)…one of the things that occurred to me was that, while the treatment providers always have patients thinking “I’m untrustworthy, they don’t believe me” (which is often true–even the clinicians who really liked me didn’t believe me half the time), what patients are *not* thinking about: how broken the system is, how ridiculous their diagnoses are, how little the treatment providers actually know about you as a person while they’re making their pronouncements, how the treatment providers themselves are not trustworthy, especially as far as psychiatric drugs are involved (the system’s biggest con?)
It’s a very common tactic of a con artist to make “the mark” constantly question themselves: “am I trustworthy? Am I unlovable? Am I a bad person? Did I do something bad? Do I need to apologize?”
All the while, the con artist is thinking of ways to take all of the mark’s money, smiling at them, saying: “Hey, I know you’re untrustworthy, but I’m going to give you my trust because I’m a very nice guy”. It’s all a set up. It’s all part of the con.
What I’m trying to say, not very well, is, don’t let them make the focus of all interactions be on how broken/unlovable/untrustworthy/non-compliant you are. You have every right to question the treatment providers, evaluate their behavior, point out whenever they stray from whatever they present as their treatment protocol, when they lie (therapists do lie. I’ve seen it happen).
At the end of an embarrassingly long run as a psychiatric patient, I realized that they had taken almost everything of mine (money, time, health, social status) and then they had washed their hands of me. Only then did I realize that they had been the untrustworthy ones the whole time.
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You are very right Kate. Having had experience myself with the system, I think it is a con, like you say. Remember that their primary job is to try and make sure that people they THINK might be dangerous (before you’ve ever done anything wrong) are controlled. That’s literally what it’s all about. In my country, they can only put you in hospital if they think you’re a danger to yourself or others. So that’s what it is all about – eliminating what they think of as a risk. It is not about helping you as a person. Why would they care about you? They aren’t you, and they aren’t your parents or family. They have no reason to care about you.
To put it another way, nobody will ever care about you in this world as much as you care about you.
N.F., who you replied to, made a good point, that you need a sense of self in order to be psychologically healthy. But psychiatry tries to rid you of that. They try to rid you of your own self-esteem, so that you’ll take their meds and shut up. Perhaps the solution is just to prove them wrong. They keep telling you you can’t do it without the meds, but what about the years of my life before the meds when I was just fine and did things that I liked? They don’t know you. Helping someone would be encouraging them. “You can do it”. But all they ever tell you is that you can’t do it. Unless you take their horrible, poisonous drugs, they say.
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Very well said! Yes, they bulldoze over your sense of self, your belief in yourself, then tell you that “low self esteem” and “unstable sense of self”‘ are symptoms of your “disorder”.
For anyone who’s vulnerable, this can be devastating. And it seems like, if you’re not vulnerable (if you have a strong sense of self), the system will try to take that from you.
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After being on every psych med known to modern medicine (decades of being medicated), I’m one year free from pharmacology!
I’m also done with traditional therapy and especially psychiatry.
I’ve been doing co-counseling, where there is no power hierarchy and no judgement.
Wow! Feeling SO much healthier!!
I just wish I hadn’t wasted all those years believing I was “sick”.
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Way to go!!!!
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Power hierarchy and judgement, the main ingredients of so-called “psychotherapy”, are exactly what’s wrong with “psychotherapy”. For me these were barriers to genuine healing — not to mention the boatload of garbage called “diagnoses”, “medication”, and “psychoeducation”.
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“Psychoeducation” is not education; it is psychological projection (aka brainwashing).
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Power hierarchies and judgment are not only barriers to genuine healing, but barriers to genuine connection.
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Wow! Your story reinforces my own experience that most psychiatry…and I have been ‘helped’… ie kidnapped, forced medicated, brain and organ damaged and told to shut up about past unresolved trauma…by psychiatry for decades…on behalf of predators who abused me as a child ritually…and now cry ‘crazy’ anytime they fear I may be a legal threat to them as a witness to their paedophobia…when I was actually suicidal my family provided no, absolutely no healthcare response at all! When I started remembering being sexually abused by them…I found myself in a psych ward and on strong meds in a hurry for the first time…and once you have been put through their soul destroying ‘treatment’…as you would know…it is so easy to get ground through again and again and again…I also wholeheartedly agree that the six conflicting labels I have been given over the years…have not been helpful at all! PSYCHIATRY KILLS! And…PSYCHIATRY SHUTS UP SURVIVORS OF CHILD ABUSE FOR PAEDOPHOBES! (Obviously, if you know any Latin, ‘paedophile’ is a term which has mostly been misused…I am not worried about ‘child lovers’…love cannot do harm…parents should love their children of course! I fret every day about a world with way too many paedophobes (i.e. any at all!) and institutionalised hatred for women and children – these two hatreds aways go together as women are the source of children)
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Thankyou for sharing and I loved the way you put it -you made the decision who to trust and the people who were understanding were fellow patients. I echo your experience. It is such an indictment on the current system that there is more help and support to be found outside it than within.
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Thank you for sharing your story. Your health shines through in the clear and concise way you have expressed yourself. Prior to retiring, my work as a therapist showed me that untreated trauma is behind almost all human problems. I developed a self-help EMDR program and wrote about it in a MadinAmerica article titled, “A Self Help Version of EMDR could Make Healing From Trauma Easier”, in the July 2, 2021 edition. Would you accept a link to a free download of this program? You have no doubt done a lot of work, but the program would help you search your brain for any pockets of unresolved traumatic emotion. This is a not-for-profit program that is in use in 32 countries. If you are interested, just send me an email identifying yourself as the author, and I can reply with the free link. Take care, David B., LCSW (retired trauma therapist). [email protected]
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Yes the “men”
I am a man and I say I hate men that sounds like insanity- but just like you and all of us tossed like rags by these Men, you know what we refer to: the brutalist neuroleptics-loving cold hearted jerk who is the gate keeper and whom you mustn’t ever be showing your self to, all the retraumatisation be damned to their mind, dare we frighten their cozy minds? One can never know why there is such a hatred to us, and in even sanity I do not play their game of “that’s your symptoms version of you” as that IS me when it is too much to bear life so alone. I’m glad you have found others who are humans, not tantilised by the System and neurotics over diagnoses. But it is indeed hard to find people once you are erased in a way. This United States also is a morbid place to live- with the classes stuck aside each other, tears and fears bridling it into a cold state that need not be!
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“But it is indeed hard to find people once you are erased in a way”
So true. Very well said.
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