Sunday, February 18, 2018

Comments by Julie Greene, MFA

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  • Stephen, At McLean Hospital the night staff were very unprofessional. In fact, I remember the staff being untrained and unprofessional on the whole. There was a marked difference between the “units” where the patients paid out of pocket and the “units” where patients were covered by Medicare. Huge. Medicare patients had untrained staff that had only high school education. The pay-out-of-pocket units were staffed with very experienced staff. I know this simply because I was there as both Medicare patient and also visited others, this over a very lengthy and involved period. These wealthier units had experienced staff, many having worked there over a decade. They were well-trained.

    Even the food was better on those units. They had home-cooked meals. The food at McLean on the Medicare units was about as inedible as could be. It was mass-produced, not like “tray” food you get in a community hospital that you order off a menu. They brought it onto the unit in a big container and then, dished it out. Like elementary school food. It really couldn’t be eaten sometimes. You worried about contamination.

    As for the staff…Night staff slept all night. Some quite deliberately. One of them, I recall, a woman, brought pillows with her to work. She put two chairs together and put the pillows on the chairs, just so she could sleep. Then, she put a hospital blanket over herself. The other staff, a man, ordered all patients into their rooms. We were not allowed to leave our rooms from maybe 11pm to 6am. Period. Exception may be to pee, but they would harass you for peeing even. Now this lady slept ALL NIGHT. I know this. I did get up to pee. I have diabetes insipidus and I get up every night, to pee and get a drink of water. The guy did not allow me to get a drink so I called human rights and he got in trouble. Sorta. She STILL slept through the night and would get annoyed if I walked past and disturbed her.

    The object of these night staff was to give the patients enough “meds” to ensure we slept and then, NOT WORK. The guy used his work time to study for whatever classes he was taking during the day or evening. He was not working, either.

    I am amazed that these night staff got paid. Why is it that so many people struggle to get jobs and keep those jobs, and these night staff got paid to NOT WORK and be so cruel to us patients?

    Then, maybe a few weeks later, I told my outpatient psychiatrist, “The night staff at McLean slept on the job.”

    My psych told me “That’s impossible. You must be psychotic.”

    I can’t tell you enough how harmful it was, all those years, to be called psychotic when I was not. It was like being caged forever. And how satisfying it is to be free now to write these words.

  • Gabi, I think a lot of life has to be learned and cannot really be taught. One is active and the other is one acting upon the other as subordinate. Somehow when the learner actively self-teaches, whether or not there is a teacher who guides the learner, the learning is learned better because it is actively done. And wanted and sought after. If we are curious and want it, we will seek it, or if we feel a dire enough need we will make it a part of ourselves. It is like walking a mile a day because the doctor insists we exercise (we are likely not to!), and walking a mile each day because that is how we get to the bus to go to work.

  • yes you do make good points. I really would have wanted peer support sooner and would have maybe been more open-minded to trying something besides the traditional approach had someone who had had ED approached me. The problem is there is very little crossover between ED and psych. And there is pretty much NO peer support for eating disorders. God forbid people might actually get better and the ED treatment places might lose money.

    I don’t think you guys realize that there really is an ED community. ED is treated entirely separately so these patients hang out together. They become “treatment buddies.” They even call themselves that and they friend each other on Facebook. Sometimes maybe 400 or 500 friends, all from these ED treatment places. Many of these are residential treatment places where these young kids cycle in and out of. Many of them go in and out 10 times a year, every year, and they’ve been doing that since high school or even earlier. They are a clique. They have their own Facebook pages. It is not the same world as psych, and they look upon psych as different (although there is overlap).

    I never saw this world until I was over 50 and I was rather shocked. I was shocked at the human rights abuses these kids put up with. To them, it’s NORMAL to be locked up and they call it “treatment.” They don’t even know that it’s not normal to be watched in the bathroom and watched in the shower. They were taken too young. I was 50 and they called me granny and were very cruel from the onset. Then they claimed I was psychotic when I started trying to point out “human rights” to them. It was a losing battle.

    Never mind NEDA, which is the NAMI of eating disorders.

  • Exactly, Darby. It does vary from state to state and outside the US, too. Especially how each state uses “peers.”

    And, Madmom, each state’s commitment laws are different and each state’s patient rights laws are different. I come from Massachusetts where they have what’s called the Five Fundamental Rights….These I have not seen elsewhere. Most states do have a code and most do include something about Patient Respect…but this is not measurable and difficult to prove if broken. Most have basic laws about restraints that are rarely if ever followed. I am unsure if the locales claiming they do not use them really do not use them and maybe just don’t document it. The Five Fundamental Rights are very specific, a little easier to prove one way or the other.

  • I did! We had that in my high school. We had that for many issues, including drugs, that is, street drugs, but not just that. It’s a great concept but yes, it was co-opted. It is a term used in the workplace also. Peer support is used as a workplace terminology to mean a workplace support and networking between workers or sharing between one workplace and another professionally. Such as networking between specialized nurses. If you look on Glassdoor (if you are looking for a job) and input Peer Support you are unlikely to come up with what we’re familiar with. You’ll come up with anything from truck driving to nursing to business specialties. Yes I tried.

  • Unfortunately, cb, you are right, there isn’t much support out there but it depends on where and how you look for it.

    I know this is just me and it might not apply to anyone else. Sometimes, the harder you look, the harder it is to find it.

    And if you look for it in others, you might not find it. I used to think I needed a therapist, and I did not find a therapist. I thought I needed a friend but I couldn’t find one. I looked around and then there was only me and my dog. This was around 2012 and I had this flash of something, I wasn’t sure what. Puzzle (my dog) and I were standing together in the kitchen and I figured it was just me and her and somehow everything was going to be okay.

    Nothing was okay after that for a long, long time, but I remembered that exact moment like it was saved in a photograph even though it wasn’t.

    After that I had a terribly scary thing happen (trauma) that made me fear this thing called “help” as if it were a four-letter word. I am still scared. So whenever I hear “help” I am scared like it’s a knee-jerk reaction. I am blessed with the trauma that protects me against the help that is not help at all, but harm.

    Now I remember that photo.

    See what I am saying? I am blessed because I found the real help by shedding the false “help” and finding it instead within myself. Well, me and my dog actually. I know the idea of self-reliance is a culturally centric one, but I embrace it now as I did as a young kid when I read Emerson and Thoreau and incorporated the ideas into my own ideology. I should not have listened to psychiatry’s imposed ideas of dependency, but alas, I was swayed for too many years.

    We survivors have a lot of unbrainwashing to do, and it is a difficult road indeed. There is no help, and very little support.

  • I agree, Madmom. I am not about to “drop out” anytime soon. Although I must admit a few people have tried to convince me to “drop out.” I tried. I really did! I really tried to NOT read anything from MIA. I tried an MIA vacation. I couldn’t do it very long. And I do not want to “drop out.” I don’t have it in me.

    I am not saying one shouldn’t take a break. Nor am I saying MIA or any “movement” stuff is addicting. What I am saying is that I feel fucking passionate about this. Why should I not? I LOVE the passion I feel. That passion is who I am.

    It is exactly this that gets me up every morning. It is this that lets me eat every day, and keeps me from starving myself, and keeps me from immersing myself in my eating disorder like I used to do. It gives me a reason to go on.

    It keeps me writing these words. And I keep on writing. It is the same passion that makes sure I never, ever give up.

  • Madmom, Hey, do you call writing several thousands of words per day “work”? Hmm…If they threatened me to stop doing it, is it even more “work”? ha ha ha

    If they pay you to write, is it work? If you do it passionately, is it more work? If you have a degree in it, is it work? If they claim it’s a disease, is it then NOT work, but a “disability” or a “compulsion”? Do you then get paid “disability” for it? What is that they call it? Grapho…..Geez. I hope I have a lot of that. That and oppositional defiant and very disorderly please. “While you are here, waiter, could you please add in an APA protest or two on the side, and please, no salt……”

  • And another question. Peer work. What is work? How do we define “working”?

    I have asked myself this recently after a terrible experience working a low-paying job which thankfully is over. The bosses threatened the workers regularly and bullied us, all the while claiming fairness and claiming they were “sticking to policy,” ha ha. They added new policies all the time, every few days, and claimed if you broke their policy you’d be fired. I loved the scare tactics so much. I told them so.

    Anyway……giggle giggle…..So much for company culture. Pee faster? Fast food, anyone? I gotta laugh. One worker told me that in order to eat fast enough to shorten my break I should make a smoothie for myself. Geez, was it coming down to that?

    I challenge myself with this question…What IS work? What is a good worker? Is a good worker one who obeys a boss without question and does what she is told even if she disagrees? Or is a good worker one who thinks for herself and challenges what doesn’t make sense or doesn’t seem right? Will a good supervisor do what she is told even if it means bullying a worker she’s in charge of? Or will she do what she knows is morally right, defying upper management, and instead, be fair and kind, risking losing her job?

    What IS work? Which of these constitutes work and who decides? Why should a person who is following her conscience be let go, while a person who is merely following orders be paid and kept on?

  • I think I linked it myself. Maybe. That is the blog that made my own personal history. I say that because really way back when, no one kept a blog. I mean back in 2005 when I started. My shrinks knew but they thought of it as a childish hobby. Occasionally they took interest in it. Cell phones were not common then. Until the advent of the cell phone, mental patients didn’t have interest in doing much online and didn’t have online access. Well, I was told I was “the exception.” I kept on blogging.

    Anyway, I kept up my blog and in 2011 after that water deprivation I was not only shocked, but totally LIVID. I blogged about it but my docs barely noticed.

    My doc and Massachusetts General Hospital took notice in 2013 and that is when all hell broke loose. MGH told my doc that she HAD to drug me till I was incapable of writing about the abuse anymore. They demanded she give me antipsychotics. She told me this in April 2013 and she was acting totally berserk, right in her office in the Wang building. I was so embarrassed. All this, over my blogging. She repeatedly threatened me, demanding that I “stop writing” and told me I was a “liability problem” for the hospital.

    I had a choice. Continue to write, or give in to them. Keep my freedom of speech, or stop. What would you do? I was even threatened by the cops early in 2014, and that was similar. Stop writing, or else……

    Well? I left the country! I value my freedom of speech and freedom of expression too much to stay in such an environment where I was constantly being threatened like that.

  • I am very very wary of anything called “disability” and rarely call myself by that label except to state that I don’t see well (and therefore, couldn’t possibly drive a car safely). Or to state that I am not very tall and therefore, need a step-stool at times. I am fearful of aligning with disability-help organizations. For instance, one in my area promised “jobs for seniors.” I am 60, so I “qualify” as a senior. However, when I called them, they grilled me! They asked me right away if I was dis-abled and then demanded to know what my dis-ability was. I refused to tell them anything and told them, “Why don’t you send me your materials in the mail?” They did. I got their application which included a place where a neighbor had to sign saying my living situation was what I say it is. And their “jobs” pay sub-standard wages, half-time only.

    This, they explained, was because it was “training for a job.” I question this seriously. If we are “seniors,” then why do we need long-term “training” for an entry-level job that others take only a day or two to train for? Why weeks or months of training? So I asked them what this “training” consisted of. They were very vague on that.

    I have passed up this (ahem!) opportunity since i fear it’s “day treatment” all over again. I fear that this “training” consists of “group discussions” and “let’s talk about it” and “how do you feel” and “pep talk” and “breathing instructions.” I really will miss the Group Hug, though…….

    If they phone me I’ll just tell them…maybe…I’m working on it….Or maybe I’ll say, “Hey, it’s in the mail…..”

  • The jobs I looked at but couldn’t apply for required a driver’s license…These were hospital-run organizations hiring supposed “peers.” Where I currently live one hospital runs the whole area. They’ve bought out other hospital systems that used to flourish here, so now, it’s a monopoly, just like Harvard runs a monopoly not only in Boston but all over Eastern MA expanding into NH and into Maine. So here where I now live, this one hospital system runs the medical establishment in an extremely wide area, branching into neighboring states. Common citizens hate this big business unless they are employees getting paid well by them! Also, this means patient record-sharing whether you want it or not.

    Anyway, they were advertising for “peers,” but all it was was “taxi service” to appointments. That’s why they wanted the driver’s license. I do not qualify because i’m nearly blind. As for lived experience, likely a few therapy appointments counted. More than that they probably didn’t want.

  • What I saw of it in Massachusetts, and I never visited any of the Western MA RLC programs, they really were identical to day treatment in every way. I was embarrassed and I didn’t know how to react nor what to say to the “clients” who attended. “Hey, don’t you realize you could be doing something useful with your time?” I had hoped for “alternative” meaning political activism, APA protests, education about why not to take drugs, but that’s not what was there. It was more validation of the System’s supposed illnesses.

    And breathing exercises remind me of nuthouses too much….I can’t stand the idea of someone telling me when to breathe. I am too anti-authoritarian for that.

  • Darby, When we speak of this, why are only the “drug” stories the ones that are getting out there and the other horror stories suppressed? Why is it still called “hospitalization” when the doors are locked and people are committed by the courts, forced to stay, and even taken by cops from their homes?

    We have this recent story of a high school in Florida. They’ll talk about the about supposed “mental illness” till they are blue in the face, about how scary and violent we are, about how much they should abuse us even more with their treatments, with their force, and put us away for life and deprive us of every right we have. And totally miss the point.

  • I was shocked when the Boston Globe published a story about a couple in Acton, MA (where I think mostly they have money) that kept getting packages from Amazon that they had not ordered. Now this was a major article in the Globe. Huh? This is the most trivial story I have seen, and THAT was deserving of a Globe reporter’s time and energy?

    I have contacted reporters. I have begged them to put my story in the papers. Why do they care more about this rich couple getting Amazon packages? Shame on them! One reporter contacted me and was interested but it sounded like she was going to put it in some very obscure paper…Still, I started telling her but didn’t get to the point fast enough, unfortunately. I tried to give her the proper medical background (assuming she’d need to know about the kidneys, no?) and then, she cut me off, impatiently, and hung up before I made it to the juicy part. “Hey, I was abused in a hospital.” I never got that far. She hung up saying she wasn’t interested.

    I can see why people get frustrated when they can’t get lawyers to sue and just aren’t being heard. When our friends and relatives claim our story is trivial (why don’t you just get over it?) and when the forums are only about drug withdrawal. When MIA will only publish four “personal stories.” When people say we have “anger problems” but we know our anger is justified. When expressing our anger is called yet one more “mental illness” worthy of therapy and pills. When talking about a mental hospital is called a “war story” like it’s a fucking taboo.

  • Exactly, Stephen. These “professionals,” the ones I used to see, spread around that I’m psychotic and tell other patients not to listen to me, not to be friends with me, that they’ll get “triggered” from me. NEDA (the NAMI of eating disorders) is pissed at me, too. On the whole, these sell-out organizations don’t like people that talk about human rights. I’ve even seen bogus claims that talking about “rights” is a sign of “paranoia.” Some of the patients, whose lives are basically full of the contradiction we know so well have been very very cruel to me, also. I’ve had to get off Facebook at this point. I deleted my account.

  • Stephen I can’t even find a FORUM for hospital abuse! I can’t find anything. Others are looking, too. We are not alone, there is a large population dying to find a venue. I personally was called psychotic when I wasn’t, for decades, and it is very hard to explain just how deeply harmful this is. I was also called suicidal when I wasn’t, this was acutely damaging to me, and this, too, is very harmful. I also have this deep-seated anger in me that started in 2011 when I was deprived of water in a hospital to the point of medical dehydration. I can’t just wish the anger, trauma, and knee-jerk fear away, just like that. I have a lot of privacy issues that arose from the hospital abuse. And I cannot control other people’s insistence on seeing me as disordered. It is their choice to continue to view me through their diagnostic lenses. I can’t control this, but I can choose to not associate with those that see me as “mentally ill” instead of understanding that I was deeply harmed and might have good reason to need people to bug off.

  • I think if there was a peer support for eating disorders it would consist of helping people who 1. had the experience of struggling with eating and 2. had the experience of being traumatized by ED “treatment” (which is far more violating of human rights than regular psych “care” on the whole).

    That I know of, if you stay in longer, #2 looms larger and larger. The trauma increases exponentially and affects your eating difficulties…if you even manage to stay alive. I think a group of peers to help alleviate the trauma would certainly save lives.

    And…given the grim statistic of psych “hospitalization” increasing suicide rates drastically, peers who help by actually believing people after they leave these hellholes would be lifesaving. You shouldn’t have to leave a psych prison where you were treated like a subhuman animal, and then, go home alone and cry your eyes out for months, or fall into the hands of some therapist who will dismiss what you say and call you psychotic or call your anger a disorder.

  • Darby, I heard sometime around late 2011 of the “Recovery Movement” which seemed to be a group of people who validated that there was such thing as “mental illness” but also thought you “recovered” from it. I never liked their ideas. They were big on “coping skills” and such. None of it related to what I was going through at the time, so I dismissed their ideas and moved on.

    Having discovered MIA sometime in 2013 in a flash I realized that others knew the same things I did, that what there was to “recover” from were the human rights abuses done to us. Whatever ailments we’d suffered from, if any, that brought us to their offices or “hospitals” were now either resolved or forgotten. For some, now, having left psychiatry and therapy far behind, we finally had a chance to deal with these problems head-on.

    The “recovery” movement avoids human rights issues. They kept saying “Don’t tell war stories!” I thought that defeated the purpose and I didn’t want much to do with them after that. It was like telling me to shut up.

    The one thing I want to do, still, is tell those war stories loud and clear so the whole world knows I was badly abused in a hospital. I don’t see the point in telling it in a therapist’s office. I want to tell a major TV station or newspaper, but I can’t pique their interest. I am still looking for a venue. Still. If I was rich or famous they’d care, but I’m not, so they don’t. There are so many of us bursting with these unresolved stories and nowhere to go with them.

  • I am so happy that you are pursuing this, and that you pushed on to discover the lack of insurance and licensing issue.

    I, too, was caught up with an unlicensed doctor. He was the one who initially put me (and countless others) on disability payments. It was 1984 and I had been turned down in 1983. He put me on SSDI for schizophrenia. Based on his word only, no tests were given, not even psych tests. In fact, I hardly ever met with him.

    Bryan I am happy that you are able to do this before the statute of limitations has passed. For many of us, we cannot pursue a case because we’re too exhausted during the years following the harm, and the period of time passes too quickly. These doctors and the facilities that support them get away with destroying people’s lives and making money off of it.

    I hope you realize that you are young and you have many years ahead of you. You can do a lot with the PI license. I hope you use it creatively and productively to screw the field of psychiatry for many years to come. BRAVO! And best of luck with the lawsuit. This is indeed groundbreaking. Brain disease? Naw, you have chutzpah.

  • Darby I wish I could forward this article to the peer support employers that turned me down. I applied to a number of them. Laughably, one employer made me do an online personality test, one of those employment tests they have you do to see how compliant you are. I hope I failed miserably!

    Many peer support jobs in my region require a driver’s license and they check if you have ever had any speeding tickets, etc. I asked why once and they said because you visit “clients” and drive them to appointments. Is this not a form of coercion? I couldn’t apply to such jobs even if I wanted to because I do not have a license.

    Other peer support jobs turned me down due to my lived experience. Ahem.

    One I applied to had a group interview. I noted that the other candidates did not have lived experience. They were college students, specifically, social work students, who wanted college credit for being “peer support” workers. Huh? Apparently the agency didn’t care and wanted them anyway.

    I notice that there are very few opportunities for peer support in the eating disorders field. In fact, ED treatment centers try very hard to end friendships between us. They claim we will “trigger” each other, or claim we’ll “interfere with each others’ treatment plans.” They will stop any discussion of human rights, confidentiality, or informed consent.

    I was turned down for a blogging position by an ED organization because, in their words, “We don’t object to your writing but we’re afraid you might discourage people from seeking treatment.” Yes, they were probably right. I hope to save lives.

  • Yes, Tireless. There should have been a response decades ago. And I don’t think the response necessarily has to be from the psychiatric/psychologic community. Getting BED into the DSM had everything to do with pharma and nothing to do with “having our voices finally heard.” To believe the latter would be naive indeed. I think the response to destructive eating needs to be to take all ED’s out of the DSM and recognize them as truly serious problems. ED’s are thought of as mental illnesses and people can stop thinking of them as such (it really takes a huge leap to do so) then you see them as really much MORE serious and deadly.

    I think ED needs to be taught in nutrition schools as mainstream nutrition study. Right now, it’s not. You go to a nutritionist and they know ONLY about diabetes and kidney disease. ONLY. They might know a little about the stereotype of ED, but that’s all. They don’t really know. Nutrition therapy for ED should be covered by “insurance” for ED and in many locales it is not. A person who is suffering, say, a college student (a kid like I was), should be able to walk into University Health Services and get an appointment with a nutritionist who knows about ED. You should be able to mention ED and they should know what you’re talking about, and not give you that stupid blank stare. Colleges should have peer support communities, other kids who went through ED. Students shouldn’t have to go through a therapist to access a nutritionist and other vital services.

    I have contacted my alma mater where I developed ED (Bennington College) numerous times and asked them if they would like me to come and speak. I told them I would not charge a cent. I reminded them that students may be suffering and that having someone come and speak might reach a few of them. They told me they were not interested. I have also contacted their radio station several time asking if they wanted to interview me. I have yet to receive a response. It is disheartening, to say the least (especially since I paid all that tuition…)

  • Tireless, ED’s are not a “middle class” issue. Stereotypically, ED’s affect the affluent, however, statistically ED’s affect people from all backgrounds. People can develop ED’s later in life and even during elder years. I don’t see ED as necessarily a “family” issue especially when a person has left the nest decades ago. Also frequent among elders is laxative abuse or at least habitual laxative use. After 50 or 60, when a person has anorexia it is so easy to misdiagnose as early Alzheimer’s, which means spending the last years of one’s life in a nursing home likely drugged and tied into a chair. One of my elderly neighbors who was at least 80 was a compulsive exerciser. She was also being abused by her daughter. She wasn’t thin. When we think “eating disorder” we see a stick thin teen and we don’t think of elders, but I have known elders who suffered, either lifelong, or developed it late in life, and I was an elder anorexic myself. I don’t see “family” as being the cause nor answer to anorexia for those of us who are older. And in fact when I was 23 and living on my own, “family therapy” was irrelevant, destructive to our family, scary for my teenage siblings, bewildering for my parents, and really a complete waste of time. Except maybe profitable for the therapists, i don’t know.

  • I have heard so many “me too” stories in response to this article. People have written to me telling me of how they were sent to ED “treatment” (or took themselves there) and how then this “treatment” then negatively affected their lives due to trauma. I know that those of us who take a human rights stance on ED treatment are not some tiny minority! I know that many are afraid to speak out for fear of retaliation or fear that they will be refused medical treatment for other conditions, or will be shunned in some fashion. There is much pressure to remain silent on the human rights abuses in ED. I hope that people can speak out, because these abuses keep people sick in their ED’s, keep people playing those control games. It is a terrible cycle to get caught up in.

  • Lenora…Yes, yes, and yes. I have found that many people who align with addiction model did indeed suffer childhood trauma, but we have to be careful not to stereotype or make assumptions the other way around. I think people have to decide for themselves if the model is helpful. A therapist cannot say, “You have an addiction, therefore, you must have had a rotten childhood.” See the difference? These things must be realized ourselves, like an awakening, because that way, we empower ourselves.

    I agree also that food problems such as celiac (for instance) which really creates malnutrition. There are many variations of this malnutrition and various ways we don’t get what we need, mostly without even knowing it. Also, if you found something that works, GOOD! I support finding things that work! I support self-experimentation! Try out new methods and find out what works FOR YOU! I honestly don’t think relying on “standard protocol” is going to be successful for most of us.

  • Julia, Yep, pretty much. I remember a lot of that. Being boxed into that mini-world. Except I didn’t have it as a child, in fact it didn’t start until I was well into college, oddly.

    I didn’t end up with the forced weigh-in until I already had diabetes insipidus, decades later, which is a condition that involves needing to drink a lot of water anyway. So that complicated the water-drinking part. What a game! If I didn’t drink, I ended up dehydrated. If I did, I was accused accused accused, just for doing what I needed to to do. The only solution was to end the forced weigh-in. One therapist agreed (suddenly realized I was an adult) but the other didn’t seem to realize I was over 50. Can they not do math? Wow I really hated that. I hated getting into the johnny, the ritual of it.

  • I agree totally, Registered. People are smarter than psychiatry thinks. People can decide for themselves IF they have access to information. We do not need the middlemen called psychiatrists, who only lie to us and give us limited information. We should be allowed to take full responsibility for our decisions. Psychiatry does not take responsibility when it screws up, after all! It blames the patient when its drugs, prescribed by the lying middlemen, fail.

  • JC, I had the same problem with a bullying ophthalmologist. I had to be firm. “I am seeking a second opinion.” Mainly because I did not want this jerk operating on my eyes! Also, I am afraid of doctors after what happened to me. The guy called me stupid and put that in my records. When it came time to go back I called them and told them I had relocated and no longer had need for their…ahem…”services.”

    Also, when I went to get glasses, the glasses were done wrong. I had to be firm. The bifocal line was put in the wrong place. A month later, they produced the right glasses and made double sure that line was right.

    If anything ever hurts the last person I’m going to call is a doctor. That’s asking for trouble. I just wait a few days.

  • Tireless since I didn’t purge I do not have lived experience with it, however, perhaps it is something that a person can decide for herself and ask the following question…Am I doing this out of habit, or, am I doing this because my body demands that I do this? It is highly possible that the body prepares to purge upon sensing certain cues, and actually gets the stomach ready by increasing stomach acid, or possibly gagging on cue. I know people who told me this happened very easily for them, and often when they didn’t want it even. So the person would have to ask these questions and face them very honestly. And then, be prepared to work hard on stopping. It is a difficult battle since the body wants to continue with it after you’ve been doing this for a long time.

    I know from experience that many people develop a disliking toward the feeling of fullness to the point that it becomes intolerable…and you have to work up to tolerating it again. This takes much hard work and patience.

  • Steve I tried to sue MGH but I was so traumatized that it was hard to get anyone to believe me at first. It was hard to get myself back together. I was kinda crazed, scared to death over what they had done. A similar “case” occurred in the UK a year later to a man who had diabetes insipidus from a brain tumor. He actually phoned the cops, which was appropriate…anyway, he died of dehydration. This was 2012. It was called a human rights outrage. Me? I was called crazy for it. And yet, it was the same thing. Same abuse. Yes they could have killed me and one big THANK YOU for validating me.

    My own doctor denied what had occurred and begged me to stop blogging about it. She threatened me and told me she was drugging me to force me to stop writing. The abuse just never stopped. So you can see why I finally left the country.

    Even then, a lot of people refused to believe me and claimed I was psychotic. Some people even said the “unit” I was held on at MGH didn’t exist. Wow, they just didn’t know the real truth.

    The statute of limitations is past but that I know of, the fact that I keep writing about it smears their reputation badly enough. Writing is powerful, and it pisses them off plenty.

  • Yes! I found it was not too difficult, once I got the hang of it. If you do not want to be labeled, do not go to a psychiatrist or MH professional. Do not act like a mental patient, do not call yourself one, do not use their language, act responsibly and when in the presence of medical professionals, don’t admit that you ever went there. Get away from anyone who calls people by mental illness labels. Make this a habit and you will not be labeled yourself.

  • MGH’s explanation for depriving me of water was that it was their standard ED protocol, that all their ED patients had to follow it. So all the ED’s that came to their unit had to be limited to 32 ounces per day regardless. I have diabetes insipidus, which is a rare medical condition meaning that I need far more water than that just to stay alive. Limited to 32 ounces I will become quickly dehydrated after a few days, which was what happened. My real need is six times that amount, which they claimed was a psychological addiction. By the 11th day, of course, I feared for my life. I was very scared and begging for water. I was trying to sneak some, too, but they were threatening me and physically abusing me. You have to realize when you are medically compromised (I was dehydrated upon admission) it makes it much, much more frightening. This was 2011 and I left very traumatized. The trauma was denied by my providers and mistaken for mania.

  • Another thing: Patients develop secondary problems due to ED, such as osteoporosis (leading to broken bones and growth problems if the osteoporosis happens in childhood), stomach problems, all sorts of digestive difficulties, inability to get pregnant, birth defects, heart trouble, on and on.

    When a person has stomach or digestive problems it means they literally cannot eat or can’t eat certain types of foods. Or can’t chew or swallow. It gets very complicated. I have known people who get so physically ill that at that point these physical problems are so important that I think the psychiatrists need to butt out. For instance, if your electrolytes are totally off, or your blood sugar is nil, you can’t think straight and I don’t think this is time for a psych eval, nor time for a diagnosis. In fact, it’s never time for a diagnosis. And yet, they insist. I think they are hard up for customers.

  • Yes, I have tried to alert the MIA community and tried back in Massachusetts. No one seems to realize that ED’s are treated separately from psych or different “protocol” are used. Bathrooms are locked and often, patients are monitored in the bathroom, or even watched while peeing or defecating. Or asked to say the alphabet. Some patients are watched while showering, not allowed to shower or do anything in the bathroom alone. This is terribly traumatizing. They are force-fed via tubes, which is rape in some locales, depending on the legal definition and whether the tube is forced. Some have the tube in for a month or more, and some are monitored via 1:1 to make sure they do not take the tube out. I know from first hand experience that some of the 1:1 people can be abusive, even physically abusive or verbally. I have heard reports of sexual abuse from patients. I have also heard multiple reports of tying patients down, even tying children down, or tying them in the day room, or tying them to wheelchairs, or, demanding that they stay in bed all day. I have seen patients with total muscle atrophy due to forced “bed rest.”

    Force-feeding can lead to refeeding syndrome, which often cannot be cured and leads to patient death. You will have to look this one up. Refeeding syndrome is usually caused by “treatment.” The hospitals are very scared of this. It is potential lawsuit material. Because they are so scared they abuse patients in their utter fear.

    I was deprived of water at Massachusetts General Hospital while in “treatment” for anorexia in 2011. I ended up traumatized and have really never gotten over it. They never acknowledged fault nor apologized. Instead, they tried to put me in a state hospital.

    More and more ED patients are put in state hospitals. When I called NEDA about this a few years ago trying to help out my friends they said they don’t do anything about it.

  • Becky, Yes! I know Jeanine and I support and agree with her work. There are so few of us out there who are at the point of realizing that these “rehabs” do nothing but use force and coercion and take your money. Years ago there was no money in ED, now, of course, there is. And because there’s money, the ED organizations are pushing for “awareness” to get more customers. But as soon as folks like me speak out we are silenced. The fact that BED ended up in the DSM is all money.

    None of this has anything to do with the fact that people really do suffer, and we’ve been suffering for a long time. MIA readers need to be aware that the ED treatment centers are separate from psych hospitals and the human rights violations at the inpatient level are far worse. They are also more expensive, on the whole.

  • Hi Tireless, Unfortunately, since many people keep their ED’s secret we don’t have accurate statistics on it. I have seen the most insane “studies” passing as “accurate.” For instance studies done in girls’ dormitories at boarding schools…How is this a cross-section of the general population? Sadly, men get ED, too. I have spoken to men with ED and they tell me it is very hard to come out of the closet.

    With men it can happen just like it happened with me. Many men even seek “treatment” such as therapy and pills and end up “treated” for mental disorders but the ED never gets addressed…and this can go on and on for decades. I know several men and women both in such a situation. With men, it is harder since they are less likely to be believed nor taken seriously.

  • Nowadays, mental illness is taken seriously and the ED community is fighting to be included into the MI category and I do not support that. The ED community, including NEDA/BEDA and other ED organizations have made a point of not including me (BEDA/NEDA kicked me out of their conference last year!). They do not like human rights activists apparently.

    I don’t know how Pat defines disease. I personally see ED’s as something very real that people suffer from. Just because people suffer does not mean it has to be a “disease.” One does not mean the other (although we, as a society, are conditioned to believe this). I have been accused by the ED community of denying the severity of ED’s because I have stated that ED is not a mental disorder.

    I am waiting for the ED community to respond to this article. I tried Tweeting but I am not adept at Twitter. My tweets seem to disappear.

  • Tireless, I agree, I do not use the word “recovery” either, mainly because it has been co-opted by other groups. I don’t use the word “recovering.” To me, what I am currently recovering from, in all seriousness, is the abuse I endured during my last few years in the MH System when I was in my 50’s. Much of it consisted of their attempts to silence me as I was emerging from decades of fraudulent psych diagnosis claim. This is an ongoing process for me, and a very difficult one.

    I agree, too, that the objectification of women is somehow linked to capitalism. We must realize, however, that ED is not exclusively a women’s or girls’ problem. When a man has ED the issue is compounded since if he tries to get “help” he is not likely to be believed nor taken seriously since it’s seen as a teenage girls’ problem.

    To call it a disorder or not? Yes, I do. I do not call it a psych disorder, though. I consider it outside of the psych realm. We have seen ED portrayed in the media for so long as psych, and we’ve seen it linked to psych, and patients are told over and over that “it’s all in your head.”

    Is high blood pressure psych? What if psych decided it was? They’ve put smoking addiction under their umbrella, why not high blood pressure? Why not heart attack, since they can get far-fetched and claim “stress” causes it? I actually saw that happen to a person! Why not claim kidney disease is psych since kidney disease makes you tired (from anemia). How about those dubious ones like Irritable Bowel and Fibro? Haven’t we seen that, too? When I was in the nuthouse (McLean) they told me my cracked tooth was not cracked, but it hurt me because I was grinding my teeth at night without my knowledge, due to “anxiety.” They tried to give me Haldol for that (this effectively delayed my getting the tooth pulled until it was badly infected).

  • And something I want to say to people with ED who may be reading this. You DO have choices. I know you didn’t choose to have an ED. I did not. You do choose to go back to those so-called “professionals” again and again when you know “treatment” fails you over and over. Why keep going back? Why not take a different path or try something new? Why not trust yourself? Why keep believing these doctors?

    Believing them, and continuing to go back, that you do have control over. It is your choice when you go back and go back. You are not a failure. They have failed you. It isn’t even treatment. It is imprisonment and taking away of your rights, and you do not have to choose to return to that. You can choose to live your life. You can choose instead to find something to be passionate about instead of going back. That, exactly, is how to get over ED.

  • And another thing….Many people have been shocked that if I say it’s not a mental health issue I am ALSO saying it’s not serious. NO WAY! These are not the same statement. It doesn’t have to be a mental health issue to be “serious.” Having come very close to dying of this thing, I am well aware of the seriousness of ED’s. You do not die of depression or schiz. Your brain won’t implode from thinking or having a feeling. You die of ED’s because you die from starving or electrolyte imbalance or dehydration, and many people are dying at a seriously alarming rate. Or you die in treatment because they refeed too fast. I recall a while back three people I knew died in the same week. It is very very scary.

    Still, I wish it wasn’t at all in the DSM. I wish it wasn’t treated by MH professionals. I wish they would butt out of the ED field altogether and leave it to nutritionists and other types of specialists, especially peers, folks like us. Peers are the real experts, people who have been through ED. This IS about the food, it’s about that first diet you ever went on. It’s about the reasons, if you can ever dig them up. It’s about acknowledging it, and moving on.

  • Frank if you had been through an ED I am sure you would say differently. If you had been through psychiatry’s total inept “treatments” and therapy’s irrelevant solutions year after year, and been through their scare tactics and ineffective imprisonments over and over, only to find yourself starving again and again, I think you would have an entirely different opinion.

    Psychiatry and therapy have no relevance to ED, and have no answers. This IS about the food, which is a substance. ED is about starvation and its consequences. I wish I had known, and bypassed the MH System altogether.

  • Hi Sam, From what I know and have observed, after anorexia many people experience either lack of hunger signals or an abundance of hunger. For those who do not yet experience any hunger there are various strategies that I have heard might work. One is simple discipline, which will work for those who thrive on discipline and orderliness. You might tell yourself you will eat at noon and then, eat at noon. Or, you might say, “I will eat after I finish this assignment.” And you might “reward” yourself after eating with something else, something pleasurable. Pick anything

    For many, though, discipline can backfire, especially when too much rigidity has been a problem.

    You just have to ask yourself where you are on the “organized” spectrum. Some folks find beat themselves up so much, while others do not know where to begin to discipline themselves in terms of managing their eating.

  • I see these as physical addictions. Can people stop psych drugs? They are physically addicting. right? Booze is, too. Binge eating, as I have explained, is physically addicting, as is anorexia, and these things are not so easy to stop, especially when you have some “therapist” harping on you or threatening.

    Have you noticed that if a smoker is nagged, that smoker will cling to his/her habit even more stubbornly? However, if the smoker is left alone and he/she is allowed to see that not smoking is truly appealing, the smoker is likely to actively take the leap.

    We have a problem of the System acting as naggers, which is effectively keeping people sick. It works awfully well to keep folks out of commission.

  • Tireless I don’t have any statistics on this, but many people have told me that support groups helped them. They stated that being among others who experienced the same thing in itself was a relief. People told me OA and AA helped them, or an ED support group. I think there should be more of this. There should be more peer support, that is, people who actually went through the struggle.

    I have heard them say in facilities that it wouldn’t be a good idea. They keep saying we would “trigger” each other. Yes, it is BS. They’re just protecting their money I think. If we actually got better they’d lose their customers.

  • I don’t understand why Islamophobia is included here in MIA. It is a social issue, an extremely serious one. I never knew anyone locked up in a nuthouse for it. I never knew anyone labeled by a psychiatrist as a racist or antisemite, or homophobic, either.

    Of course I knew many bigoted shrinks, especially women-haters. And I must say, psychiatry and the Mental Health System itself is one of the most serious social threats we have in the Western world.

    People act collectively in ways that they would not act as individuals. I know this to be called either GroupThink or gang mentality. When it is directed by a group at an individual, it can become bullying. When police engage in GroupThink it can turn to police violence, which is amplified due to the group effect. I have seen “staff” act in GroupThink fashion, acting violently or verbally abusive against individual patients.

  • Hi Carol, I could certainly relate as I am Jewish, grew up in MA, and found my introduction to Christianity (at age 21) extremely traumatizing. This was both in the form of exposure to a religious cult, and afterward, born-again type Christianity. I developed an eating disorder the following summer, when I was 22, and a big part was spiritual dissatisfaction. I felt that I couldn’t connect with God anymore, that my fat was getting in the way. Really what was happening was that leaving a cult, you tend to go through grieving, and you do feel disconnected, and disillusioned with society as a whole. Like society is only dull black and white, and the cult was in full living color. You can’t get over the disappointment, like everyone is shallow and trite. I wanted the cult back, but I couldn’t have it back. I wanted God back too. That warm chummy feeling, even though the cult was deceptive, I still wanted it.

    None of this was ever addressed in 34 years in the System for me. Not once. Well? They never asked. Fools.

    I think your point about spiritual crisis is a good one. And I cried when you said you tossed out the bipolar book. YAY!!!! If anyone reads this and tosses out theirs, too, it’s a victory.

  • I couldn’t agree with this article more. I have known certain religious people, well-meaning, I must say, to make claim that anger is bad, that’s right, MORALLY bad. And then there are others that take “Turn the other cheek” to mean you are never to express nor even feel anger.

    I agree that anger is amazingly useful. My anger at the MH profession saved my life. My anger got me away from them. My anger helped me realize just how wrong they all were. My anger showed me the diagnoses were fraudulent. My anger fuels my writing and fuels these words I am writing now.

    Just as Sarah says here, I, too, was called paranoid just for expressing anger. That’s so insane, insanity on the part of people who have the audacity to call themselves “professional.” I was called violent, too. I have some choice words for that I cannot even say here.

    Julie

  • I believe there were cases of anorexia in the 1800’s. And there was a guy in France would was known to not be able to stop eating. I literally cried when I read the Wikipedia article about him. It was heartbreaking. They ended up imprisoning him in a prison where (they say) he ate live rats. But this was not verified, so it may have been a rumor.

    There is a disorder that basically comes from your appetite center not working right, and that is called Praeder-Willi. It can usually be found alongside learning disorders and sometimes, but not always, mental retardation. It is detectable, something missing basically. You do not get a satiety signal, so you just keep going. I saw a YouTube on this and bawled my eyes out thinking of how these folks suffer. No it is not gluttony, it is a horror story.

    You bet I thought for a while I had PW. However, the main difference is that binge eating turns on and off. PW never turns off. I hope this speaks to the seriousness of BED, for anyone who doesn’t “get it.”

  • I should add the following. I don’t know where this statistic comes from. Seventy-five percent of binge eaters are specifically addicted to sugar. I have heard that sugar addiction is so powerful it is more addictive than booze.

    I have known people to realize that their problem was sugar. Then, they realized all they had to do was to stay away from sweets. This really did solve it. However, if the sugar abstinence is then turned into another strict, rigid diet, the diet mentality then takes over and the purpose is totally defeated.

    This is likely why sometimes, meal plans fail, because a meal plan can be done so zealously that of course it’s the next diet. You then are set up to fail. I have known therapists to reinforce the setup!

    I am not addicted to sugar. I knew this early on. I do know (through experimentation) that I was likely addicted to some types of dairy food, and possibly my mother (who had ED many years before I was born) was also addicted to some dairy foods. For a while I started noticing that when I went grocery shopping, I was fine until I walked past the dairy aisle, then, all hell broke loose (and that was usually toward the end of my aisle-wandering).

    For some time, I was afraid to keep any food at all in the house. It was a matter of buying one meal at a time, just tiny quantities. I was so scared. Now I am proud to say those days are over. I can even purchase dairy food and leave it in the fridge and not worry.

  • To be honest after a while I began to realize “they” do not have the answers. I kept looking to them and asking, begging really. “If you have all the answers, why can’t you make me better?” I just got a shrug, or a pat answer like, “Follow your treatment plan.” I knew they just didn’t know.

    Incarceration can’t really solve it since you’re locked up and don’t have the opportunity to binge. For many, this actually is so darned ironic. You’re free while you’re locked up. You’re free from bingeing. I really thought this. For those two weeks I was free of that hell. Then, they’d let me out and it would start again. That was my life. My secret life because I couldn’t get anyone to understand. Even during the years they had no clue I had ED, I lied sometimes and made up some stuff about being suicidal even though I wasn’t, so that I wouldn’t have to go out again.

    When I finally got free of psych I was also free to experiment. Wildly. Many failed. Many had mixed results. I loved that I could do anything, mix up my food, try eating different ways, try different eating patterns, try out different mindsets, and even try out fad diet pills you could get over the counter (only the cheap ones).

    Just being free of it all helped so much. You would think that I would have gone wild with the bingeing, but that’s not at all what happened. I’d say I was free to find what worked with common sense and logic. I was free to figure out what I actually liked and didn’t like.

    I was free also to figure out that I actually like myself. I always did, but psychiatry wrecked it for me all those years. I liked myself before, but now, I like myself a whole lot better without the diagnoses to cloud up stuff. Being away from them I find I know myself a lot better. That is so important!

    There are things I can’t do, or don’t like doing, or just am not very good at. I have to face that. I am not superwoman, just me. Some things are too hard for me, and probably someone better skilled than I am should be doing those things. (Like reaching up to high places, since I’m so short.)

    And also, therapists used to tout “mindfulness” and “living in the present” which is a culturally-egocentric value in my opinion, and not for everyone, especially us older folk who thrive on our hindsight. We are good at storytelling. Let us tell our stories! Therapists should stop demeaning us for it, and stop complaining that we’re dwelling on the past. This is what us older, (wiser), folk do.

    Why pathologize it? My therapists pathologized what I got my degree in, writing memoir.

    My mom used to say we had to be good because she “had eyes in the back of her head.” Did she? I used to look, try to see in her hair. Really?

    She did. She had wisdom and hindsight. And we foolish kids couldn’t even see it. But that is okay, because now I do.

  • Exactly. I know that many times while I was normal weight I had a harder time being taken seriously. “You look okay, what’s the problem?”

    You make a valid point about making that number on the scale so important, and equating it with self-worth. It is so hard to detach these two things. I do own a scale but I could take it or leave it. I think the word is desensitization, or something similar. I don’t see it as the Judge. I used to. I remember the number made it or broke it for me. Now, other things are more crucial. When we find things that are crucial that we care about more than that number, we’re on our way.

  • Lawrence, Do parents really know what their kids are up to? If I had been 10, yeah they would have noticed. At 16 I could have hidden it. At 22 when I started I was living far away and there was no reason for them to be worried. I called now and then and updated them on how college was going.

    As for “education,” no one dieted back then. What education was there to be had? No one had heard of ED. Know what we talked about in my house? Politics, going skiing, and Nixon’s resignation.

    You have to realize many people develop ED when they are older. Maybe even after their parents are no longer living. We aren’t all kids. You cannot blame parents.

    I think people need to know that extreme dieting CAN be very dangerous. It can be like doing a very addictive drug. You think you can stop. But suddenly you’re sucked into it.

  • As for coping, from what I recall of my later years in the System I was “coping” with abusive treatment by starving myself. It was about the only thing left I could do. They cornered me into it with their power plays. They kept telling me what a bad patient I was, too.

    I got rid of the ones I had, then, tried to get new ones. I remember going from one office to another, asking them to help me. I didn’t know there was no help there.

  • Psychiatry is very quick to call us rigid perfectionists. I have issue with this. I’ve even had therapists demand that I stop working hard at college! I can’t help it if I like the subject matter of the class!

    Another thing I had issue with was the fact that I like to run. They automatically assumed any exercise at all was OVERexercise. But for many, exercise is extremely helpful. It helped me to like my body more and to see food as fuel, not as the enemy.

    I’m happy to say that after I got those fools out of my life I have been free to run as much or as little as I want. I’m 60 years old and running a 5k in about a month. I look back on how they demanded that I stop running and I realize THEY had the control problems and foisted them on me.

  • Yes and no. People with ED vary. Many are men, too. And also, many are older people, even folks in their 60’s and 70’s who are suffering. You can even start ED late in life.

    Another new thing is these weight-loss surgeries. Actually I have known a few people who got the surgery, and then, developed ED! Also, new are the drugs, which can cause all sorts of ED’s. I have heard of purging disorder caused by drugs, anorexia, and many developing bulimia, all from psych drugs and other pharmaceuticals.

    Another thing I’ve been trying to work on is that the weight-gaining drugs like Zyprexa should never be given to anyone with a history of anorexia. I think there should be a black box warning. The reason is that unwanted weight gain from the drugs will later cause a rebound effect and the anorexia will return with a vengeance. This happened to me post-Seroquel, and studies show that these drugs can often do this.

  • Exactly, Richard. I had no clue what I was getting myself into when I started the diet. I sure didn’t want to lose more than a few pounds. I had no plans beyond that. My first binge absolutely shocked me. I had no word for it, didn’t have the word “binge” in my vocabulary. And I didn’t know “eating disorder,” either, nor “anorexia” nor “bulimia.” This was not due to naivete, but because such things weren’t known back then. In 1980, remember, this was the year Ronald Reagan was elected, and the Vietnam War was fresh in our memories. Life was very different back then.

  • Steve many therapists who have control issues themselves get into the ED business. The ED “protocol” according to many therapists means forced weigh-in, reporting your food to a therapist or nutritionist, threatening the patient if she doesn’t gain, twice a week therapy, once a week weigh-in (see my article on this, it’s very very scary for kids), and a psychiatrist. This is the “team” (slavery) approach.

    The claim that ED is all about control…if it ever was…it now becomes control by the treatment team! So the control shifts. The team actually tells the parents to lay off, in effect they’re saying the parents did a bad job or caused the ED, that is, if the patient is young….the State is the Better Parent. “We do a better job so let us take over.”

    Now, the patient of course assumes these folks are actually working in her best interest and know better. Is ED about control? Yes. Yes. Yes.

    When that happened to me, THAT, is exactly what almost killed me. I was so trapped in it. When I look back I know I was responding to what they did. I know I starved myself voluntarily, but this was almost a defense against them, against the System that had harmed me.

    And in saying this, I am alive and fighting back. It needs to stop.

  • Oh by the way, Frank, there are people who literally eat themselves to death. If you sit in on an Overeaters Anonymous meeting you might meet folks who seriously struggle with overeating. I have met people whose lives were very much taken over by overeating. I can say that overeating is not the same thing as bingeing. Some people suffer from both and some one or the other.

    I recall trying to explain this to people, even doctors, and since they never experienced it themselves it was futile and pointless.

    That I know of, in some regions overeating and bingeing are not even seen as distinct from each other.

  • The part that was a choice, that I wish I had not chosen, was to believe the lies of my doctors and therapists all those years. First of all, they ignored my ED and assigned me other diagnoses. It was my mistake to believe them. That was a very bad choice.

    It was also my mistake, over the years, to believe they had any answers at all. It was my mistake to believe the lie that “doctor knows best.” It was a lie that we patients should “go to staff” or to a “professional” every time we had a problem.

    It was my choice to fall for all of that. It was my mistake. It was a mistake that cost me over three decades of my life.

    It was my choice to turn my back on psychiatry and the entire mental health system. In doing so, I am doubly blessed to see the end of my ED. I realized then that the System didn’t have any answers. The answers were within myself, and are within each and every one of us. I can only hope that others see this, so that the 30+ years I spent are not a waste, but can be made into a story that helps others beat this cycle.

  • Lawrence I think most of the reason they almost always diagnose patients with concurrent psych disorders is because they want to drug us. They don’t have drugs for anorexia, so they tell us we’re depressed so they can give a cocktail of drugs. They even make excuses for giving Zyprexa. I’ve heard them telling kids that Zyprexa was “to calm you down” but really of course it was to induce weight gain in patients who weren’t gaining as fast as the insurance companies were demanding.

    They never acknowledged binge eating disorder until they had the designer drug. Back in 2013 I honestly didn’t realize this. Back then, I thought, “Oh, after all these years, they’ve finally listened.” Wow what a sucker I was. No, after all those years, they finally figured out how to make bucks off of us. And that’s the very sad bottom line.

    While statistically, more and more are getting ED, it’s also true that there’s financial interest in widening the ED umbrella. ED “treatment” is lucrative now. “Early detection” means more money for the ED prisons. We should be concerned because this is a human rights tragedy.

  • Yes, this is true. Data supports that usually religious fasts don’t cause eating disorders. I am sorry for the misunderstanding here. I didn’t go on a fast. I went on a restrictive diet that I found in a diet book. The difference is that mine was prolonged. Not that I planned this.

    My guess here is that the writer was figuring most would break the diet and not stick to it for very long, or at all. He claimed you’d lose weight rapidly. What I did was stick to it. I was really starving. I started in the beginning of July and stuck to it through the summer and into the fall. I was not actually overweight to start with.

    The religious part was the reason behind the diet, that is, it wasn’t to “get boys,” nor to look a certain way. I don’t think I owned a mirror even. I was in college, a music composition student. I think part of the reason no one believed me for so long is because I didn’t fit the stereotype.

  • I notice you edited your comment, Lawrence, to include seizures as exception. For a while during my long stint with psych I was wondering if my binge eating episodes were caused by seizure activity. I really didn’t know for many years.

    In the late 1980’s a doc said I might have TLE. Then, in 2011, another neuro said the TLE was a false dx and any irregularities were drug-induced. I believe this was correct. I never had those symptoms and anything similar I now realize was the effect of ECT back in the 1990’s. Hindsight….

    As I state in the article I solved the entire eating disorder problem by getting myself as far away from psych and therapy as I possibly could.

  • Lawrence as I said in the article, therapy and psychiatry perpetuated my ED, first by ignoring it and assigning me psych disorders I never had. Then after 30 years had passed they finally decided I had ED.

    I was now in my 50’s! So now, they did ED “treatment” on me in the form of force-feeding and using scare tactics. They threatened me over and over. It was a power play and it just about killed me.

    This is how it was. The therapist would demand over and over what I had eaten, would accuse me of vomiting, would tell me she had ways to get me into the state hospital, and if I was as little as ten minutes late for our twice-a-week appointments she’d be on the phone with the cops…sectioning. Once I was studying in the library and my phone rang. It was her. She said, “Where are you? I’ve called the cops on you.” I have to laugh at that one. This is the kind of stuff I had to live with, living in constant fear. I was told if I didn’t gain a half pound I’d be incarcerated. I was told I had to take a cab and couldn’t burn any calories doing anything at all. These therapists should go out of business.

  • ED is usually caused by a restrictive diet, that is, CAUSED by controlling your eating habits. Does that answer your question?

    From what I recall, this being decades ago, you have to realize that in 1980 hardly anyone went on a diet. I didn’t grow up in a chronic dieting family either, nor did I grow up giving a hoot about weight nor about fashion. I never looked in the mirror nor cared about my appearance.

    I went on a diet for religious reasons. I don’t consider myself a perfectionist. I didn’t have low self-esteem and I wasn’t depressed either. Come to think of it I wasn’t “anxious.”

  • Obesity does kill. When a person suffers from binge eating, that person may become overweight or maybe not. During my decades of ED, I was various weights, and even when I was rail thin I suffered horribly from bingeing. I begged for help and what happened was I was not taken seriously. OR…get this:

    I was told it was “good” to binge. The truth is that an extremely large binge can cause stomach rupture and that is almost always instantly fatal.
    …Or I was told it was no big deal…..
    Or I was accused of vomiting. This repeated accusation was traumatizing for me.

    If you really do binge it horribly disabling. You can’t work like that and you can’t function at all. You are sick all the time, and you go broke, too. It’s no way to live.

  • Well, again, you are relying on stereotyping. The stereotyping even seeps into “treatment.” So what happens is that young and vulnerable people are told “You are a rigid perfectionist” and of course that acts like a diagnosis. Most patients will rise to the occasion and act the part.

    Trauma may drive a person to go on a diet, but it is the extreme diet itself that triggers the cycle. Dieting causes a vicious cycle and it is so hard to get out of it that many tell me their lives are ruined by it. Therapy actually can reinforce the cycle by heightening the power play.

  • I have a lot of faith in orthomolecular nutrition. I actually saw Dr Pfeiffer himself. My parents took me to him hoping that doing so would convince me to get off the “medications.” This was way back in the 1980’s. We drove to NJ to see him. Sadly, at the time, I decided he was a quack and dismissed everything he said. I think this was because I saw my psychiatrist as a god who could do no wrong. I wish I could take all that back.

  • The comments here are really great. Steve McC I saw your comment in my email but I can’t find it now.

    Yes people do feel terrible sometimes, to the point of considering suicide. If you feel that conflicted, is that a “need”? Well it’s a need for something but not for psychiatry, lockup, and labeling.

    Yes, people suffer and yes they need something. They need to be heard, first and foremost. Most mental health modalities focus on symptoms and bullshit illnesses, not on real life problem-solving and issues such as poverty. Therapy doesn’t address it because therapy milks the poorest of the population (now, as this wasn’t always the case), so it’s an embarrassment.

    I have personally known people and read many stories about people who were in some kind of “treatment” for ages with therapists and during all those years the real thing bugging them was never spoken about.

    Then, something happens or some new person nudges their consciousness a bit. Then it all spills out. A sexual assault, abuse, bullying, these kinds of things that don’t get discussed in therapy if they don’t fit the therapist’s idea of what might bring patients to their offices. And some therapy patients never ever talk about what is really on their minds.

    Here is an example and this is public knowledge, a story I found online. A young person was suffering for a long time, and her therapists kept trying to hound her about her “abusive parents.” She knew her parents hadn’t been abusive and staunchly defended her upbringing.

    Finally, she was able to unearth it and tell someone. No it wasn’t her parents, but she had indeed been abused. By her grandmother.

    Yet this story doesn’t fit the stereotype. Nor does my own. I was abused while in high school but not by a family member nor relative. I was abused by my “best friend.” Trust me no therapist wanted to touch this one. They mostly insisted on defaulting to “abusive parents.” It was so harmful to me and harmful to my siblings (ripple effect).

    I did need to talk to someone. I found people sometimes, not therapists, usually some person older than myself I could look up to as role model, or mentor. Back then folks didn’t go to therapists very much.

  • yes, either way you are right.

    I think we need to go back to basic principles. I can think of things people here probably agree on, such as forced drugging and ECT. However we are divided on “therapy” and even divided on what parts of the System should be abolished. All, or some?

    I know many therapists try to silence me about therapy abuse and claim that my telling my story is counterproductive. I have had to drop my membership in groups where there were too many self-righteous therapists claiming their practice was practically flawless and only an “exception” would be abusive. Not true.

    I refuse to take on the mentality that all non-drug approaches are humane. In therapy, all you have to do is to tell a patient she is psychotic or delusional when she’s telling the truth, and you have the recipe for very bad abuse.

    Many therapists do rely on the DSM and many believe in their diagnoses, too. Ever try seeing a therapist who saw you as schizophrenic or other psychotic diagnosis? You are never ever believed. You can try all you want but they won’t believe a word you say. Everything you say is denied.

    You can tell them anything. Like that you were sexually assaulted. They ignore you. I told my psychiatrist that a therapist asked me out on a date so I fired him. She claimed I was delusional.

    I have had nurses roll their eyes at me when I was in kidney failure, and discuss me like I’m a thing. I hope they are reading this right now. #mountauburnhospital

    This can happen with, or without the use of drugs. I believe the term is gaslighting.

  • We live in a society where force is a way to wield power. Children are forced to go to school and if parents keep them home, it is considered truancy. In some societies woman are forced to obey their husbands, I daresay right here in the USA. Workplaces can be forceful. A boss or manager may threaten employees with “dismissal” should they act out of line. Employees are threatened with background checks and drug screenings. The atmosphere is oppressive in some of these workplaces, with much division between workers and those up top.

    We have normalized force, we shrug off the use of it, and that is not right.

  • Fiashra after all those years looking to doctors for the answers, I more quickly found those answers within myself. And they were there all along, all those years but I stubbornly turned outside of myself because they insisted on their expertise. I believed them. I no longer do.

    I find the idea of seeing to it that psychiatry and the entire MH System loses its customer base is a great idea. Many of my neighbors refuse to see Western Med doctors and are extremely skeptical.

    There are two things. 1. Share our own experiences, and 2. offer compassion to those leaving or contemplating leaving the clutches of the System. And to me, the System means dependency on a therapist, too. I don’t see a person as free of psychiatry unless they can break the therapy addiction.

    I also think we need more venues (media) for story-sharing, getting these stories to the public.

    I personally joined Toastmasters and nearly every speech I give (about once a month at least) is anti-psych, or has antipsych overtones. I am competing in the International Speech Contest this year, and also trying out for TED Talks, likely 2019. If I get anywhere with this it’ll all be widely broadcast on YouTube etc. I’ve been working hard at public speaking and I find it comes naturally to me.

  • There is no venue for therapy abuse. You can’t even go to another therapist for help with resulting trauma. That would defeat the purpose, no? And all that affects me to this day, affects my relationships and my ability to get along with others.

    I have even tried talking to my friends about it but they do not want to hear. Very few anyway. This subject needs to be brought out into the public and we need to be able to speak about it without being called paranoid.

    Look at what bringing sexual harassment did, people spoke up after many years. This is what I am hoping for.

  • Well for that I apologize. My own organ damage IS permanent, permanent and life-shortening. Truth is I cannot get medical care for it because to seek medical care means down the line revealing how I got kidney damage (lithium). I have to live with the damage from lithium on a daily basis, my sleep is affected, I have permanent anemia, sometimes my red blood cells are deformed or swelled up, I drink six liters of fluids a day to compensate and take electrolyte supplementation. I also almost died a few years ago. I was lied to and told I caused it. Then I found out my kidneys had been failing for years, maybe a full decade, due to past lithium use (12 years). I was also lied to about my own medical condition.

    However, abuse trauma, from psychiatric abuse, caused me to fear and distrust doctors so much I am having trouble submitting to a cataract operation. I am blind in one eye and the other barely sees.

    I am not trying to minimize drug damage because to do so would be hypocritical. I AM trying to emphasize therapy abuse since it’s fucking taboo around here and therapists’ feelings get hurt so such stories are suppressed. Some people have no clue how abusive some therapists can be and just how hard it is on a person. Never mind what that woman did to me. Most do not even want to hear about it.

    Adam Lanza was a victim of therapy abuse, too. That is how badly it damages a person.

  • Stumble into a great relationship or maybe have a pet stumble into your life. Stumble into church or a really cool meetup group, or, a gym. Friends of mine have found a lot of solace in the older self-help books such as How to Win Friends and Influence People. I personally liked When Bad Things Happen to Good People.

    I really have to give my dog Puzzle a lot of credit for being the awesome doggie she is.

  • I think the work rules and “time off” rules need to allow for time off and no incentive should be there to move people from the welfare system (state, temporary) to the permanent SSDI system (or SSI). Once moved to this federal aid, fewer than 0.5% make it off disability.

    I call for more allowances for time off and fewer incentives to put people on permanent disability. I don’t think any psych condition is grounds for putting a person permanently out of the workforce. I do see conditions created by psych such as TD, brain damage, some organ damage as grounds for a disability claim.

    As substitute for psychiatry, which is practiced in a secluded office, I suggest more compassionate and caring communities.

    I notice slight differences between locales in terms of community caring. Watertown MA was cold and hostile, cars beeping at pedestrians just for being slow, a lot of road rage, and hostile and unfriendly neighbors.

    I found South America friendlier, but you did run into a lot of inappropriate behavior due to too much alcohol use.

    Where I live now, in one of the communities, within one month I was offered a ride by a passing motorist (just uphill a block or two) when they saw me struggling with my bags. Not only once, but four times in one month! This is totally unheard of where I lived in MA. I was so touched when the drivers stopped and asked.

    Also, at my workplace, workers were noticing that New Yorkers were more hostile and, as the word goes, irate. I am wondering if it’s a matter of population density, that too many squished together is going to produce hostility anyway, because it’s unnatural to live like that. People need privacy and space.

  • Eric I love this. I, too, collected stuff, my best being a pool ball from a pool table on Wheeler 3, Emerson Hospital, in Concord, MA. This is where I met my boyfriend in 1986 whom I dated many years. Wheeler 3 isn’t the psych unit anymore. They moved to North 5. I had that pool ball many years.

    When I was in McLean a gal and her boyfriend (he was not inpatient with us) stole SO MUCH I was in utter shock. He would leave with these huge suitcases claiming he was “bringing her stuff home.” They believed it. When she started boasting about how much she had stolen, and whom she had stolen from, I started hiding my valuables. This was getting extreme. One weekend all the food was gone from the pantry! Well she got her money’s worth or some of it.