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What is your chronic illness story and what would you most want the world to know about your chronic illness or chronic illnesses in general?

Chronic illness fucking sucks. My story, is long, and sad, but hopeful. I’m hopeful.Let me elaborate.I was a normal kid. I was carried to term, a little colicky, but that’s pretty normal. The only abnormal thing was my flexibility. I was insanely hypermobile. All kids have a “thing”, and mine was flexibility. In PE class, I got ‘impossible’ scores on the mobility tests. I could effortlessly do the splits, and could bring my legs over my back and in front of my face. Still can, actually.When I was 7, I fell from my friend’s back at summer camp. I heard a loud pop, and noticed that my arm felt funny. As I cried, she pulled me up by that same arm, and i heard a louder “pop”. Pain. So much pain. I blacked out and was nauseous from it. It was the last day of camp, so everyone assumed I was crying because I had to leave. No one knew I’d just radically dislocated my shoulder for the first time.I went on in life. Started PT for my knock knees around age 8, and was diagnosed with severe environmental allergies and asthma around age 9. Quit the PT, controlled my asthma, went on with life.In the 5th grade talent show, I did contortions. I could do full splits, “jump rope” with my arms (it’s as disgusting as it sounds), put legs around my head from the back, the whole nine yards. People were equal parts disgusted and intrigued. How was that girl so flexible? No one knew.I was an athlete in Middle School. I swam for 2 hours everyday, and loved it. Though I couldn’t go up stairs without blacking out and being dizzy, I swam my way to states.This was also when I started having strange symptoms. Specifically, stabbing chest pains. Now, as “stabbing chest pains” aren’t exactly normal in a middle schooler, people were justifiably concerned. However after various scans, I was told it was “just growing pains”. During this time period I had tendonitis practically every other week, and was constantly limping for some reason or another. My parents were concerned, but after years of doctors telling me there was nothin wrong they assumed I was being overdramatic.In 8th grade, I started having severe jaw pain. Now, as a competitive swimmer, singer, and conversationalist, this would not stand. I remember watching “Untold Stories of the ER” and saw them relocate a jaw. Tried it, felt better, that was that. I mentioned it to my mom, who never thought anything of it. Why would she? It isn’t normal to have your daughter relocate her own jaw.Then, disaster. I bit into an apple and my jaw just locked shut. I couldn’t open my mouth at all. It was amazingly painful, but I had a test so I stayed at school. When I got home that day we went to the Orthodontist, who had no idea what was up. I was referred to an oral surgeon.After 3 months of lockjaw, I was 30 pounds lighter and extremely anemic. Apparently, man cannot live on protein shakes alone. We ended up at Children's hospital.The oral surgeons told me I had a dislocated jaw. No biggie, they’d reduce it in the ER and everything would be fine. Very strange in a seemingly-healthy 12 year old girl with no history of trauma, but fine.Now, this was shortly after two major hurricanes I can’t recall the names of, and they had caused a national shortage of valium. The doctors gave me the choice - proceed with the relocation with no meds at all and save the valium for other kids, or get three intramuscular shots.Me, trying to be a hero (and avoid needles), chose option one. No meds.After a fair amount of shoving, swearing, and general pain, my jaw was still locked. Valium time.20 minutes and three shots later, I was ready to be out of there. However, this did not happen. I had a violent muscle spasm of my mascoter (cheek) muscles, and bit the Oral Surgeon relocating my jaw. And then I fainted from pain. (Keep in mind, I’d had absolutely no pain meds, and they’d just relocated my jaw, a particularly painful relocation area).When I woke up, I was on a morphine drip and, surprise surprise! Still had a locked jaw.As I hadn’t eaten in months, was down 30 pounds, and was unable to function off of the morphine, the ER doc admitted me.Nine days of hell later, I got jaw surgery. They intubated me through my nose (definitely the worst part of this experience lol), and fixed my jaw and relaxed the muscles. However, I had a grand mal seizure coming out of surgery and woke up paralyzed from the waist down.Moved to the neurology floor, I was inspected and tested for four days until I was diagnosed with Functional Neurological Disorder, or FND. In this day and age, my diagnosis was essentially “hysteria”.They sent me to a physical rehabilitation hospital, where I spent three months learning to walk again. None of my doctors or therapists really believed in my condition, and I felt debilitatingly alone. I fell into depression, and I developed some anxiety disorders including agoraphobia, social anxiety, GAD, OCD, and PTSD. I literally have all the anxiety disorders. Yay me! What I did not have was treatment for the aforementioned mental health issues, as my parents were very anti-psychiatric meds. (Side note: don’t be those parents. If a doctor says your child has crippling mental health and needs meds, give them meds. Mental illness is a physical deficiency of certain chemicals in the brain that in some cases requires medication to treat.)I could walk again. I could not leave my house due to anxiety, but I could walk. However, I had a crazy bad knee. My PT assured my mom I was making it up, and there was nothing wrong. I never got it looked at, and to this day can’t walk correctly because it wasn’t addressed promptly.Throughout this summer, I started fainting. A lot. I would stand and subsequently pass out for 30 seconds. I was never taken to an ER or doctor, the hospital told my parents it was “just FND” and that all I needed was to “get out of my head”.The September of that next year I’d given up hope. I was extremely depressed and anxious, struggled to eat due to gastrointestinal issues, couldn’t be in public without panicking, and began to feel suicidal. I was told I needed to ‘want to get better’, that I was causing all of this. I was diagnosed with anorexia and bulimia, diagnoses that follow me to this day despite not being at all accurate.But then, just as I was contemplating giving up, I was given hope in the form of a medical student.Turns out, when you’re the weird kid who can’t open her mouth, medical students study your case. One of these lovely people noticed my hypermobility and put “possible genetic connective tissue disorder” in my chart, and 8 months later I ended up at the genetics clinic.I was diagnosed in the waiting room with Hypermobile Ehlers-Danlos Syndrome. In maybe 3 minutes, a life’s worth of pain and turmoil were answered.To say that I cried is an understatement. I bawled on the drive home from the hospital that day. When I’d basically written off doctors, this geneticist explained that my whole life I’d had this condition. My pain and fatigue? Real. Dislocations? Real. Dizziness and gastrointestinal failures? Real.Hypermobile Ehlers-Danlos Syndrome is a genetic connective tissue disorder. It causes defective collagen, the most abundent protein in the body. Collagen is what holds joints in place, makes up skin, hair, and nails, lubricates internal organs, and aids in digestion. Mine is defective. As a result of this one genetic flaw, I have POTS, Intestinal Dysmotility, Anxiety, Depression, Myalgic Encephalitis, CRPS, Dysmonnoreah, MCAS, and a few other chronic health issues. There isn’t enough room to explain them all, but basically my body’s a bit of a mess. Google them if you wish.My story doesn't end here. This is just the beginning.After a particularly nasty fight with my family about self-harm and my general failure to exist in society, I was admitted at a psychiatric hospital for a few days. Finally given Zoloft, I was a new person. I could go outside, socialize, have a life. I was free(r) of the demons in my head.A year later, here I am. At 15, I depend on a cane to walk and use a wheelchair frequently. I “eat” through a tube in my nose because my GI system is a mess. I have a large team of doctors and specialists. I have multiple chronic illnesses that greatly impact my life.But I also have friends who are understanding and kind. Pretty decent grades. A family. An Etsy shop. A girlfriend who I’m absolutely crazy about. A blog. A YouTube channel. A piano. A guitar. A voice. A life worth living.My life is not “normal”, and never will be. I struggle with and will continue to struggle with my health for my entire life. Though they will not kill me, my chronic illnesses greatly impact my quality of life. I’ve dealt with bullying because of my health, I’ve had to fight with and debate doctors for proper care. But I’m alive. Not only am I alive, I’m living. And that’s enough for me.For maybe the first time in my life, I’m happy as I write this. Happy for everything I have. Broken as my body may be, I’m happy.Ehlers-Danlos Syndrome is a potentially-debilitating disorder that is largely misunderstood and underdiagnosed. I strive to end the stigma.This is me ->~~~Edit - Holy shit, I had no idea my story would touch so many people. Thank you! I’m going to answer a few questions I’ve been seeing a lot here rather than type them out a million times.Thanks to everyone saying that I’m a good writer! I’ve loved words as long as I can remember. For those wondering, I want to go to get a degree in Creative Writing and Scriptwriting :)I use an alias on Quora because I share many personal details, such as my sexuality, here. As a semi-closeted teen this secrecy is important to me, and as a result I will not be sharing my blog/YouTube channel. However, I’m honored by all of the interest!Thanks to all the people that’ve said I’m cute. I like to think so :)General thanks for the lack of homophobia in the comments. There was one person who called me a f**, and I deleted that. Good job, universe!Overall, I’m humbled that my story has touched so many people. Many of you have called me strong, but I never really saw it like that. I’m a firm believer that anyone can get through anything, no matter how challenging. I’ve grown to overcome some rather terrible situations, and it’s changed me. But I like the new me, the stronger me. I’m kind of a badass, and I love that about myself. I especially love that I can see that about myself.Thanks again for loving my story, and sharing yours. I love you all <3

What is it like to be involuntarily committed to a psychiatric hospital?

In May 2014, mute and psychotic, I was taken to a local Emergency Department by ambulance. My visiting nurse, in concurrence with my outside psychiatrist, had called 911, concerned about my safety and my ability to function because I had not spoken for weeks and was not taking adequate care of myself. I was not agitated, instead, I was unable to speak and slowed down rather than anything else.More than a year has passed since then, so instead of relying on memory, I will paste here what I wrote shortly after my subsequent hospital stay, with edits for clarity and concision. Some has been taken from the secret journal I kept in that hospital, a journal which I was forced to scribble on pieces of torn-up brown paper waste basket liners, surreptitiously mailing them to a friend immediately the moment I finished writing. I had to do it this way because a housekeeping staff member had told me that nurses instructed her to throw out everything in my room, including my mail, each time they found a reason to seclude me, which was nearly every day in fact, and sometimes more than once a day.More on this follows.But first let me tell you what happened in the Emergency Department. I came in by ambulance. I did not want to but was given “either the easy way or the hard way” choice by the police who came with the 911 call. I did not resist or fight, nor was I restrained in any way in the ambulance. As I said, I was mute, which had deeply concerned my Visiting Nurse, and mostly passive. I merely handed the EMTs my medication sheet and my detailed but clear Psychiatric Advanced Directive. This is critical as on page one and two are clearly typed vitally important information about my trauma history and how to deal with me in a crisis, including provisions for when I might be mute.The first page of the ED chart states that availability of my Advance Directive is “unknown.” Nevertheless, the ED triage note states, with apparent disapproval and resentment, that “pt presents with detailed instructions on how to provide her care..” i.e. the psychiatric advance directive. This seems to have been immediately disregarded, as insulting to their knowledge…ED Nurses note: “Seneilya… RN Assumed care of patient. Patient arrived via EMS after VNA called for increased anxiety. EMS reports patient refused to speak but wrote down, “Sunglasses block hate. I don’t want to hurt anybody.” [*sun-glasses are “hater-blockers” yes, but they block other people’s hatred. The RN never got my point and I was mute with no way to communicate the distinction…] “On admissions patient refused to speak to this RN. Patient pointed at her head when asked why she was here. Patient nodded “yes” when asked if she was hearing voices but refused to answer other questions. …(next sentence indecipherable)Report given to Beth RN who assumed care of patient…”At 15:19 Beth RN wrote the following:“Pt not responding verbally to this nurse, this nurse looked through her art book and placed it back on her stretcher then pt picked it up and slammed it down on the stretcher and pointed her finger at the book. Unable to get pt to communicate. Pt pulled sheets over her head. Pt still in street clothes, will pt [sic] as is until examined by MD.”What is not said here is that this nurse, “Beth” never asked me whether she might look at my art book. She just took it. She refused to allow me any other means of communication, except speech. When I was unable to do this, she did not inquire as to why I did not speak nor apparently did she attempt to make inquiries from anyone else why this was so. If she had provided me with means to write I might have been able to tell her what had happened in the previous two weeks at home. Instead, she appeared to become angry and from then on refused to permit me any mode of communication other than the one she preferred.I was later given a hospital gown and told to dress myself or I would be forcibly assisted in doing so.Beth RN records what happened after a meal was given to me that I did not eat (it was not vegetarian).“Pt ate nothing,” Beth RN reports, “[but she] wrote messages with ketchup and French fries, [saying] ‘I need a crayon.” [***] This nurse told pt she needs to speak because she can, pt threw everything on her table on the floor, food juice, etc. Pt then picked up fries from the floor and started eating them and gathered more and putting them in the bed with her and kicked the other food away in the Observation area.”“Pt went to the Bathroom, seen coming from the BR with paper towels then pt observed writing with her finger on a paper towel with something, first thinking it must be ketchup, then maybe jelly, then this nurse go up to check and pt found to be writing with her own feces, some paper was able to be removed, other paper with large piece of BM pt threw at this nurse. Pt moved to room 42 [seclusion] then pt got Out of bed and snuck around corner and tried to attack this nurse [?***] from behind, [public safety was able to get to pt first,***] pt to be medicated and restrained. Pt licking feces off fingers, would not let nurse wash her hands…”In point of fact, fact I never attacked or even tried to attack the nurse ever as you will see.And the nurse knows this, because she backtracks in the chart and says so, here” the Public Security was “able to get to pt first” so she knows full well that I never ‘”tried to attack her” and they knew they had no right to restrain me. I was also already locked in seclusion so how could I attack a nurse in the hall? The chart alone makes it clear that I never did a thing. She would not have phrased it that way if I had attacked her, or even attempted to. No, if I had attacked her, she would said so. In those terms. Not in uncertain, vague terms. She never would have said what amounts to, “Oops, patient attacked me, but the guards got to her first before she, um, tried to attack me, so…um, she never did even really try to attack me, I just assume she wanted to. She just looked really, really crazy and she wasn’t saying a word, so I betcha she did.”Now I want to tell my side of this story because they invented this story out of whole cloth. Yes, parts of it are true, but the chart puts them out of order and not the way Beth related it. This is important because the way she wrote it makes me seem like I spontaneously leapt off the gurney and attacked her out of the blue, which never happened. However, I was also privy to a conversation by the so called Public Safety officers, aka Guards, who in front of me, in fact while they were holding me down (I was mute, mind you, so please remember that they forgot I was not also deaf) decided to create this story in order to justify 4-pointing me, because they simply wanted an excuse to do so.What really happened was that due to my need to communicate, I wrote my needs with ketchup on the paper box the meal came in. Then that too was taken away from me, and Beth came up to me, and instead of speaking to me, handed me a NOTE she had written (the irony of this is beyond belief!) saying, “I will not speak to you or give you anything to write with until you start speaking to me.” At this point, I was livid and also so desperate to write I had no choice but to use whatever I had at hand.So, yes, I did do as she wrote in the chart: I went to the bathroom and had a bowel movement and took some feces back to my cubicle and I tried to write journal entries about what was happening to me on paper towels with my own fecal material. And no, this did not go over very well with Beth or anyone else. But I never attacked Beth or even tried to assault her. Instead, she snuck up on me and snatched my art book out from under me and raced away with it, holding it up in triumph as she did.I was so furious that without even a thought as to possible consequences, I raced behind her to get my book back. That was all. I never assaulted her, I never so much as touched her. I wanted only to only get the book back that she had not asked to take from me. Period. As she suggests when she says, “public safety was able to get to patient first.” Well, in fact I had never any intentions of “attacking Beth or anyone else and the guards knew it. But the fact is, I never touched or attacked anyone, they grabbed me and attacked me!That was the point when they dragged me to “Room 42″. The two guards, holding me down, decided they wanted an excuse to four-point me, and though one of them cautioned that they really had no reason to do so, the other one told him not to worry, “we’ll find a reason.” And as I learned shortly thereafter from accusations of my having assaulted a nurse made by Dr. MB, they did so.But just because an accusation is made doesn’t make it factual or true, as we all know, and just because the doctor accused me of lying about it, and again when I later informed him about them stripping me and leaving me naked in the hospital seclusion room doesn’t mean he was correct either. He never asked me what did happen. He never tried to find out the real events of that evening, he simply designated me as manipulative and “volitional” -- a “borderline” -- essentially a prime-time liar. He had already conceived an intense antipathy towards me, so by the time he finally came by to see me on the W-1 Psych Unit the next day, he had made the decision not to let me communicate by writing. Therefore, his intent right from the start was not to let me tell him what was going on. He decided, from the very first moments, not only not to recognize the desperation and extreme frustration this induced, but to see only violence and willfulness in me. His solution? Punishment and torture. Period.But I am getting ahead of myself. The director of NBGH psych unit claimed to have been there when the ED incident I describe happened, when the guards said that I just shot up off the gurney and spontaneously attacked Beth, the RN, from behind. But the record does not bear this out. In fact, he never saw me at all on the evening of May 12: all the orders were written by other physicians. Dr. MB’s name is not even mentioned until the afternoon of May 13 when it states only that he was at my bedside to evaluate me. Even then, from what I recall, I was so sedated after multiple forced medications, use of four-point restraints and seclusions, that I was unable to answer a single question. Since I could not speak, given the fact that the doctor too refused me any writing implement the interview was as unproductive as could be imagined possible.I was to be admitted on the basis of his judgments from that single brief evaluation, from which he drew the diagnosis that in addition to schizophrenia, I had a probable “borderline personality disorder.” (He spoke to no one in my family nor my longtime nurse or doctor nor my friends…and he did not even hear from me, yet he drew this snap conclusion that I have a personality disorder on what basis? And yet it hideously affected my treatment at the hospital)How could he possibly diagnose a personality disorder, seeing me in such traumatic circumstances and for a few minutes only? In point of fact, what likely happened was that he took a disliking to me, and diagnosed me with something that in his mind justified his later egregious treatment of me, and in particular justified his not allowing me to write instead of speak. I cannot otherwise explain his behavior. Nor can I understand his astonishment at my response when I did not react well to these punitive ministrations. Why did he think I would respond positively? Why did he think that coercion would be beneficial? Did he truly think his mistreatment would be restorative? What I think happened is that he decided he did not like me, right from the moment he laid eyes on me -- I may even have been naked in restraints, who knows?-- and so he opted, as many men do, for savage abuse and punishment.But there are policies that hospital that hurt everyone, not just me.I want to explain what “deserving” seclusion or restraints and being “violent” at NBGH means in 2014. I also want to tell you something else even more important: In this state, the staff at almost every psychiatric unit or hospital will insist that “we only use seclusion or four-point restraints when absolutely essential, when a patient is out of control and extremely violent, and cannot be controlled in any other way.” Trust me, I know. They have said this sort of thing to me in each and every single Hospital I have stayed in since 1995.But what you need to know is that they are NOT talking about some 400-pound man hopped up on PCP, waving a machete. For one thing, that person, I believe is largely mythical, or if real now largely confined to correctional and law enforcement settings. The person they are talking about, the rule, not the exception to the rule of the “extremely violent” person whom they claim must be restrained due to lack of any other method of control, is, to put it grammatically correctly, I. I am the rule…The person they secluded or restrained almost without exception at hospitals throughout the state was none other than me.So let me tell you about me. I will turn 63 years of age in November. I am 5 feet, 3 inches tall, and until I moved to Vermont, I weighed, maybe 108 pounds on a good day, Furthermore, I have been consistently described as “poorly muscled.” Not only was my right shoulder been injured by staff encounters at New Britain’s hospital, but I before I was hospitalized there I was unable to use my left arm for much of anything, due to injuries sustained at the Institute of Living in 2013, including a small tear in my rotator cuff and possibly more than that– a fact the NBGH nurses/security guards knew (they stated it out loud) and used to their advantage when subduing me.I also want you to know that I am a decades-long vegetarian on the principle of non-violence — and have always believed in non-violence to people as well as to animals. I have opposed the death penalty since I was a nine-year old child (when I first learned of it) and do not even believe in the principle of prisons, or in treating our convicted criminals as we do. Yet in many hospitals since 2000, and of course for years before then (“before they knew better”) I have been brutally secluded and restrained multiple times as out of control — and “violent.” In addition to either holding me down by brute force, 2 people to each limb and one to my torso (this was at the only 2 hospitals that did not actually resort to mechanical four-point restraints– compared to the half dozen others that did), they routinely injected me with two to three drugs as chemical restraints (really punishment drugs, as I frequently called them, without anyone correcting my perception) whether they were required or not.I am the rule, not the exception, I am this supposedly “extremely violent mental patient” who is so out of control that hospitals refuse to eliminate the use of restraints and seclusion, because they “might need them.” I am the typical person they claim they absolutely must have the right to resort to the use of violence, for their own safety and mine.Okay, so am I truly violent? What did I do to deserve their brutality? Or should we say, their “protective measures?” Well, at at NBGH this is what happened.the MD, director of psuychiatry wrote that “while in seclusion or restraints patient would often scream.” Yet he states with apparent resentment that I had brought items with me “such as a large advanced directive.” The nursing notes repeat this as if this is a bad thing, and then they proceed to disregard every item on it. Not only that but after he accuses me of behaving with “volition” (whatever this is meant to prove) he never actually adduced any further facts or observations to back up what he means, except that I brought with me the large psychiatric advance directive and a published book of art work I had done.This book of my art, by the way, was deliberately kept from me the entire time I was on the unit, because, I was told it would be extremely harmful for the other patients to see it. The nurses repeatedly reinforced this message: any glimpse of my art would harm the other patients. This was emphasized to me: I should feel guilty not only for having brought the book with me, but for having drawn the pictures at all. The RNs seemed to enjoy my feeling bad about this….The pictures depicted my treatment in psychiatric hospitals and everywhere I go patients are fascinated by them as are staff…but at NBGH the staff emphasized how evil I was to have drawn them at all.The doctor further claims in the chart that he repeatedly “asked if patient would like to speak to him, please,” but what he fails to note is that he refused to permit me any possible mode of communication. He also peremptorily walked out on me when I could not utter a word. He notes that, yes, I threw my bed-clothes at him, but fails to mention that he would not acknowledge my gestures or try to figure out what I wanted to say. Instead, he stood up in disgust and turned on his heels and left.I admit that having already been secluded, 4-point-restrained and forcibly sedated in the ED, and then called a liar when I denied I had assaulted the nurse by the doctor who was supposed to care for me, I was very upset at being unable to make him stay, to make him listen or attend to me. So I did the only thing I could do to make noise of any sort. I got up off the bed, which was the only furniture in the room, and slammed the door after him. I meant only to make a noise to express my frustration, but unfortunately it caught him in the shoulder.This was not intentional. I scarcely recall doing it, though I confess I was so enraged by his dismissal of me, especially after the violence inflicted on me not once but twice the night before in the ED, that it is possible I wanted the door to make contact with him. What I know is that I most certainly did not intend to injure him. I only wanted him to know, before he walked away from me, that I was angry and “speaking” to him the only way I could. Dr MEB’s reaction was itself swift and violent in the extreme, and extremely personal.Enraged, his face beet-red, he bellowed at the nurses to order guards to take me immediately to the seclusion cell.“Seclusion! Seclusion! Restraints! Restraints!” he screamed. Before I could do anything or even assent to walk there, I was bodily dragged down the hall by my injured shoulder to one of the most horrifying seclusion cells I have ever seen. There were two cells, actually, each lockable from the outside, completely barren and cold except for a concrete slab of a bench set into the wall, with a plastic mattress on it. Nothing else. No commode, no bedpan, nothing but two cameras in the ceiling, but no obvious way for me to communicate with anyone. They locked me in, locked the second door across the other room, so I was thoroughly alone and soundproofed from the rest of the unit, and then turned their backs and walked away.I panicked immediately. I urinated on the floor in my panic. I took off my clothes. I screamed — wanting someone to talk to me, I wanted warm dry clothing to wear, but there was no response. I screamed and screamed. Nothing. Nada. Not a word. I did not even understand at that time that there was an intercom somewhere that they could hear me through. I thought I was completely alone and abandoned, but for the eye of the camera. So I did what I had to. I knew, yes, I knew, what would happen, I knew this because it was SOP. It was what always happened to me in the state’s torture-chamber hospitals. But I was freezing in there with the A/C on full bore and at 108 pounds and a history of frostbite I could not tolerate being cold. Furthermore, with neither a watch nor any clock on the wall, I had no inkling as to how long they would keep me there. It might be two hours or twenty, or it might be three days. All I knew was that I could not tolerate the isolation, one, and two, I could not survive the freezing temperature.So I took the johnnie I had taken off and I rolled it into a rope and tied it around my neck. I pulled on it, as if to strangle myself. This was a futile endeavor of course, because I couldn’t keep pulling on it without eventually letting go and then I’d breathe again. I didn’t want to die. I just wanted it to look outwardly as if I were strangling myself so someone would come in to check on me. Then finally I would be able to explain that I was freezing cold and just please please please I need a blanket.Well, would that anyone were so reasonable! But no such luck…Oh, yes, the intercom did crackle to life eventually and someone interrupted. “take that away from your neck. Now.” I gestured to indicate I was freezing. The voice spoke again, “If you don’t remove that from your neck, we will restrain you.” I answered silently but clearly, “I need something for warmth!” No doubt you can guess that this was a battle I was destined to lose…as it was designed to be.Eventually, but not so quickly as to show that they had any truly serious concerns about my safety, guards and nurses entered the room, along with a gurney. Grabbing me, injuring my right shoulder as well as my left in the process, they hoisted me onto the gurney. Without even covering my nude body, they locked me into leather restraint cuffs, wresting me into a painful and illegal spread-eagle position, despite my groans of pain and protest. Then to cap it off, they refused me a blanket. Someone tossed a small towel over my private parts and that was all. I was summarily injected with three punishment drugs and an aide was positioned at the door. Then the goon squad trooped out.I screamed in rage for at least ten minutes. The aide just looked away, pointedly ignoring me. When I finally quieted, I tried to signal my desperate need for water and for warmth, but the aide pretended she did not understand me. When she finally did acknowledge my requests, which I mimed with difficulty from my restraints, she refused, stating that a blanket was unsafe, a pillow unnecessary and that it was my own screaming that had made me thirsty. So she would not give me anything.The experience of mechanical four-point restraints – leather cuffs that are tightened around the wrists and ankles to shackle a patient to a bed – or being isolated by force in a freezing seclusion cell is universally terrifying and traumatizing. Nevertheless, both cell and/or four-point restraints are quickly employed to curb loudness and “undesirable behaviors” at NBGH. I know this because I was subjected to both seclusion and 4-point restraints multiple times in May and June of 2014, despite coming in with a diagnosis of chronic paranoid schizophrenia, and documented PTSD, triggered by precisely these methods of “behavioral control.”Bizarrely, the doc wrote on my chart, “Patient misperceives her treatment as traumatic.” Well, maybe so, but I think it is nearly by definition traumatic to be forced to defecate in one’s own clothing while shackled to a bed for 19 hours nearly daily, which is what they did at another hospital in the winter of 2013. This was after I was told to lie down and place my own limbs in the leather cuffs (“as a consequence but not a punishment”) for walking away from the very same “Side Room” that I had just been assured was “not a seclusion room unless you call it a seclusion room.”Again, maybe I misperceived being grabbed and held face-down and nearly suffocated numerous times by staff in August 2013, where they would twice or three times a day forcibly inject 10 milligrams of Haldol, a known drug of torture. Maybe this was just kindliness that I misunderstood as traumatic, maybe it was merely a “psychotic misperception” on my part? Maybe—and then again, maybe not.Nevertheless, the fact remains that in the ED of NBGH, a security guard in May 2014, grabbed me by my left shoulder immediately after he was warned by the nurse that it was my left shoulder that had a rotator cuff tear.My chart records that I was admitted to that hospital, and to the IOL and others with a detailed Psychiatric Advance Directive, the first page of which states that seclusion, 4-point restraints and forced medication invariably result in regression to “primitive states and severe worsening of symptoms.” My PAD also makes several concrete suggestions how better to deal with me when I am upset. Even though I spent many hours on this document, Psychiatric Advance Directives are virtually worthless in my state and doctors can and do ignore them freely.Perhaps because of this, staff literally forced me (“escorted me”) to seclusion and/or restrained me multiple times. They even had male guards strip me naked “for safety’s sake,” and even though I put up no resistance, they had the same male guards four-point me, separating my limbs into a wide-spread-eagled position – a visual rape they clearly enjoyed – then they shackled my arms above my head and my ankles open wide. I was not resisting or even able to resist. I did not say a word. But they put their hands around my neck and squeezed tight while the nurse injected my naked buttocks with three punishment drugs that were not even part of my usual regimen.Is it any wonder that what resulted was someone who would wash her hair with her own urine, defecate on the floor of her 24-hour-videotaped bedroom and smear feces on the wall? Yet the esteemed Dr MEB, the director of the general psychiatry unit at NBGH claimed that my trauma was imaginary. Why? Because treatment cannot be traumatic, so he contends. He simply never got the connection between my later horrendous decompensation and his so-called “therapy.” Maybe he never appreciated that he was torturing me, like a person who ripped the wings off butterflies as a child. Someone like that would not have understood how those creatures suffer either.I moved 150 miles away to a different state, shortly after finally being released.My grave concern is that there are people still being tortured in that unit for General Psychiatry. I did not leave my home of 60 some years just to forget about this. Justice must be served in order for change to happen.It is often claimed and assumed that we have long ago left behind the days when psychiatric patients were routinely stripped and beaten with a birch rod as “treatment” but after what happened to me just four years ago, and up until 2016, all I can ask is, Have we? Have we really?

When did you have to argue with your child's doctor?

I’n the child in this scenario.**Background**When I was six my mom started noticing extremely early symptoms of scoliosis (she was on the lookout b/c i have a family history on on both sides) at seven we asked my chiropractor uncle-in-law (who we later discovered was an undiagnosed narcissist) to examine me. he gave an extremely cursory exam (even at seven I fest it was too cursory although I didn’t have the vocab to express it) and proclaimed me scoliosis free but my grandma and mother still saw it and saw it worsening as I grew up. two years later I was nine and started having regular back pain but I brushed it off as being a result of two-four times-a-week gymnastics sessions and my mom accepted that because of technically-not-an-idiot uncle’s cursory exam. at twelve I quit gym for (my) religious reasons but the back pain stayed and my parents and i began to actually take it seriously.**Story**When we went to the family pediatrician (who had even treated my dad twenty-something years ago) He blew it off because “no teenage girl ever has a legitimate complaint…they all want attention…etc” (paraphrased) after two or three times of this with both of my parents arguing/talking with him and my mom, grandma, and even dad noticing a change in my back, we just stopped going to him entirely and spread the story to all of our family who used him. We found another doctor closer to us who immediately upon hearing our concerns and physically examining my back sent me for x-rays to confirm a scoliosis diagnosis. It was confirmed and a recommendation to Scottish Rite promised. After a year, however, no such recommendation was forthcoming despite reminders on all well or sick visits for both my brothers and myself. So we left him as well and switched to my Mom’s family doctor who immediately wrote out a recommendation in person for us. By the time we were accepted and I went for my first appointment I was fifteen. The doctors at SR told us that it was HIGHLY unlikely that my curve would increase at all because i was “done” growing due to spinal growth plates having fused (reasonable) and puberty being long-since started (less reasonable as shown later) and then refused to do anything until the next year’s appointment so they could assess changes. So we went again at sixteen. I was told that the 3–4 degree increase (which was actually quite a lot, especially as it sent me over the threshold for moderate-severe) was purely due to changes in techniques despite the large increase in pain and the fact that despite growing pains throughout the year in other parts on my body (my parents confirmed that my legs, feet, arms, etc had actually grown) i had shrunk half an inch instead of growing half-on inches as my family and i had expected. I was also told that my back pain was SOLELY due to my core being weak but the PT said that I was the most “in tune” with my body teen that she had seen in years AND i was an extremely active, fit teen who played outside and still performed gymnastic feats and conditioning in my yard every day. we didn’t go back after that because they started actually charging patients and we didn’t have the money. By seventeen I had occaisonal bouts of debilitating back pain and was taking more than the maximum dose of ibuprofen on a good day (I just realized this a few days ago and my mother had no idea b/c although she was kept in the loop concerning what meds i took when, she also trusted me to take care of my body and we had talked with the doc about what to do) and on a bad i actually took less ibuprofen because I intermixed it with acetaminophen. by eighteen we had found a supplements regimen that along with regular exercise helped tremendously and I was able to take on a full college course load along with a full high school load and main tain a 3.75 minimum gpa. Three months ago I had to quit the supplements due to finances and four months ago the ballet class that had become the only form of/time for exercise easily available to me ended and based on how my body has reacted, I expect to going through regular bouts of debilitating back pain again before my nineteenth birthday in just over one month. Mom, Dad, and I hope that the doctor will prescribe the supplements so we can get insurance to pay for them, but if not I will have to be much more careful about how much medication i take and make sure I take a (much cheaper) liver support supplement at least semi regularly. if any doctor had listened to our worries and followed through sooner I would have been spared some pain, at least emotional and mental if not much physical.**sorry for any grammar/spelling mistakes and for the length. I am extremely verbose when I am tired and it is currently 3:33 am and I have gotten an averge of five hours of sleep a night for several days.**

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