The Words That Stick Forever

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Recently someone said to me:

“You’re not even trying.”

Actually, they shouted it. This person was someone I needed to trust. A medical professional, in fact. As she and her team attempted to forcefully sedate me, rather than offering calming or encouraging words, she chose angry and cruel things to say.

I am quiet; I have always been accused of being “too quiet.” In that moment for one of the first times in my life I actually replied to the nurse. I said:

“You have no idea how hard I’ve tried just to come into this building.”

Saying that didn’t help the intense situation and it escalated even more after that, but I had to say it. The lack of understanding of the dark and difficult places patients come from is at times unbelievable to me. The lack of understanding of how much strength it takes for people to do things that others take for granted is sad.

I often think about how that situation could have played out, had that nurse and the doctor chosen kindness rather than aggression and impatience. That you could wear scrubs and claim to understand anxious people, and yet be able to yell and berate your patients at the same time boggles my mind at every appointment I attend.

I am quiet. I am also autistic, anxious and recently diagnosed with PTSD. I have medical needs just like all other humans. I found out the hard way that all these things together are too much for professionals to take. They want everything to be neat, to fit into boxes, to be simple and explainable and easy for them to fix. Mental health professionals are unable to connect the specifically medical trauma with my PTSD and anxiety and my experience as an autistic woman in the system. Medical professionals are unable to understand why I am scared out of my mind, unable to communicate in conventional ways and unable to complete treatment I need. In my experience both these parties turn to anger when things don’t go the way they wanted. Then I add another trauma to my list, either from being called names or scolded for my behavior, or from physical violence perpetrated by the team in an attempt to get me to do what they want. And so the cycle continues.

The physical injuries I have suffered at the hands of healthcare providers trying to make me cooperate are painful and hard to understand. But the harsh words that have been said to me in my most vulnerable moments are somehow harder to deal with. To tell someone who is ill both mentally and physically and in a scary situation that they “are not trying” is heartless and mean. If they really believed that their patient is not trying or is being uncooperative on purpose (almost never the case) then they shouldn’t be in that profession. If they think that those words are in some way motivating to the distressed person and they just want them to try a little harder, then they also shouldn’t be in that profession. In my eyes there is no excuse for not treating someone with respect, dignity, patience and understanding. ESPECIALLY when the person is a patient who is struggling and feeling vulnerable and scared and needing help.

I never did get the procedure or treatment I was at that appointment for. After a long physical battle to try to pin me down I ran away from the office and never looked back. I was scarred by the providers’ lack of empathy and their unnecessarily rough measures. Most of all I was deeply hurt by someone articulating what I always fear: That other people look at me and think I am not even trying when every day is a battle and the fact that I am still here is testament to how unbelievably hard I have to try every minute of every day.

***

Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.

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38 COMMENTS

  1. I am sorry for how you were treated, Annika. The professionals working in these “helping” fields seem not to question how their callousness and judgmentalness affects people who are at their most vulnerable.

    I experienced decades of this kind of treatment. Some of the worst was after ECT and then the addition of “borderline personality disorder” to my medical record. That diagnosis, I now understand, works as a code to the staff: “you can be as cold and hurtful as you want with this patient and no one will fault you for it.”

    You are absolutely correct that being treated like this in a place that is supposed to be about help leaves very lasting scars.

    Please keep writing. The world needs our testimony.

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  2. This hit so hard. What a profoundly eloquent articulation of the deep harm, trauma, and violence perpetrated by this system especially to those who are neurodivergent. I was about to call these needs complex but they are not. They are simply human. It is such an utter lack of the nuanced complexity of the human experience that has permeated and diseased most aspects of the “mental health” sector. We are ripe for real change indeed. A power shift needs to be taken so that the work of real human empowerment for all peoples can begin. Then we will all find healing.

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    • I am so saddened & outraged for you Annika & for all of us.
      I am what some of us call a “lifer” or a “career mental patient” DXed & institutionalized at 17, when long term (years) state hospitals stays were normal.
      I have been in the mental health system & because of “side effects”, in the physical medical system for 40 years now. Even though the MHS & the other western medical professionals have chosen, studied and paid to train to become healers, out of all the people I’ve met or worked with in my life, the most compassionate people, only one or two were from that industry. My favorite people, the most compassionate & kind, the best listeners, the best healers, are the ones who don’t ask for any money or anything at all from me, in return for emotional support or emotional/spiritial connection. However, ALL of those “professionals “ from the western medical industry have harmed me or participated in harming me emotionally/spiritually and physically, actively or by silently witnessing. I am, now, very physically & emotionally/spiritually injured, chronically ill & will die decades before I would have if not for being a patient of theirs.
      Therefore, I no longer have any confidence in that industry to heal my body, my brain, my mind nor my spirit. If I weren’t trapped by the mental health laws & policies and by the financial circumstances that industry created; I would run fast & far far away from the MHS AND western medicine and never ever look back. I advise everyone to do so BEFORE even entering those businesses.
      I believe with all my heart that if you are a true healer of the mind and spirit; you do it for free.
      That being said, reality dictates we must all make a living in this world we’ve created. So I am not saying healthcare workers should be expected to work for free.
      I’m saying that emotional & spiritual distress should not be considered the same as physical healthcare. And that physical healthcare and medicine should not be privatized & a for profit business.Healthcare workers should be paid by the taxes of all citizens.
      And any emotional/spiritual care should not be a “profession”. It should be given & received mutually, equally and freely.
      If you want to be that kind of healer, exclusively, awesome, but do it ALL THE TIME throughout your day as you interact with people at your job (not a job as a therapist or an psychiatrist ) , at home, and in your community. You don’t need a degree or be trained or employed in that “field”. You can’t teach that kind of healing (empathy & compassion) at any of our universities!
      Caring about and caring for each other in that way is just part of being human. That is or at least should be everyone’s job, as a human being, and done out of the goodness of your heart in every interaction we all have.
      Separating that out and calling it a business it artificial. It’s bastardizing & commercializing basic human needs and rights. And it is taking something away from each and every person. It’s taking away from the “professional” too!! For we are all born with an innate sense and ability to love. Asking money to give care & compassion is harmful to the person receiving that money. It will take from them. Take away parts of their very humanity. If person gives care & compassion freely, in return they will receive priceless gifts in return. Unless and until that innate empathy & compassion is taken from us after birth as we grow & experience the world; we all possess it. And we can all give it.
      If everyone realized this & knew that it’s not just ”professionals”, who you pay, who are the only healers of the mind; that realize we all have the ability to heal each other of our emotional/spiritual wounds. When we finally realize this, we will dispense & dismantle this destructive system and all start to truly HEAL.
      That is my belief, my vision and my hope for all humanity

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    • I think that is a very broad statement. In many cases, medicine does help. Not for everyone, but when your brain is genuinely shaped different and has improper neurotransmitters / hormone levels, medicine can be very helpful.

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    • Poor help is a scam. But no, people with autism, or ADHD or borderline personality disorder will not be cured by meditation. Or bubbles blown at a 45 degree angle off the northern latitude. Or other pseudoscience junk. Self help will cure these things? Not alone. The author had enough self help to get there, then get away.

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      • Every sentence here is plagued by logical fallacies.
        What is “poor help”? Is that a euphemism for abuse?
        There’s no proof that any DSM diagnosis is real.
        The statement about bubbles seems to be an attempt to mock people who wish to find non-psychiatric ways to alleviate their own suffering, whether that be through meditation or other practices. Who are you to dictate what another person, who you know nothing about, should or shouldn’t do to address their own pain? Have you spoken to every person who ever practiced meditation? What basis do you have to make these sweeping statements?
        Pseudoscience is what the MH system has sold and practiced forever. Insulin comas, ice baths and lobotomies have been replaced by chemicals. It’s all pseudoscience.
        I can’t decipher the last sentence in your comment.

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    • Annika, I’m so sorry that you went through this, but good for you for understanding that it was that “caregiver” and not you who wasn’t trying hard enough. My daughter is a young, black, autistic woman with fibromyalgia, PCOS, and depression (amongst other things). Although she is an adult now, I still go to her appointments with her and am grateful that the autism diagnosis means no one cares question that. In reality, I think every person who wants someone else with them should bring someone. Medical appointments can be stressful and confusing. No one should feel that they have to face them alone.

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    • I don’t think it’s quite accurate to say compassion is lacking in the world. Not quite. I think there’s been a pretty successful attempt to artificially take compassion from ordinary everyday people and transferring it to “experts”. what makes someone a true expert is lived experience. Therefore we are all experts of our own minds and hearts.
      Trying to corner the market on anything is: a few people taking away from the many and hoarding it for themselves. That is harmful for all. You do that with natural resources and you will get a few very unhealthy fat people and many starving ones. Same with healing.
      We can all heal ourselves and others—by giving it freely & not hoarding it.

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  7. I loved this quote:

    “Most of all I was deeply hurt by someone articulating what I always fear: That other people look at me and think I am not even trying when every day is a battle and the fact that I am still here is testament to how unbelievably hard I have to try every minute of every day.”

    That is exactly how I feel every time I scrounge up enough courage to tell people that I am struggling- and I only disclose when it is BAD. However, it only makes it worse. I end up fearing that they think I’m making excuses, and then their words and actions validify the fact, which spirals me into a worse depression.

    People who haven’t experienced it have NO idea how much of a struggle it is just to keep choosing life.

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  9. You are so right! I was told the same thing when they had me on so many drugs that I was diagnosed with an “unknown” type of dementia. C-PTSD, ADHD, dislexia, cronic depression, anxiety and now bipolar, are the labels they put in my records along with the dementia. I went off my medications and a truly amazing thing happened, I no longer have dementia! My depression is manageable and I believe the bipolar were symptoms of over medication as well. I was told that I wasn’t “trying” to get better when I quit most of my medications. Thank you for this article, I thought I was alone in feeling this anxiety.

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  10. That last paragraph hit me in the gut, and unexpectedly made me cry- I too have autism, ADHD, C-PTSD from my childhood, and this is one of my greatest anxieties of being in the world, that I will be weighed and found wanting in the eyes of others who will NEVER know what kind of battle I face just to leave my bed or house- I am reasonably intelligent and able bodied and people cannot understand that I would have any issues at all, it is extremely lonely and alienating and I have too many days to count where I simply want to disappear from the world. Not die, I don’t want to die, I just don’t want to be HERE, forced to do things every day that assault my nature and sensibilities so deeply that I literally don’t want to BE; and I share your fear of health professionals, I watched my mother torn to shreds in that system, and unless it is a medical emergency like stitches or x-ray for a horse kick to the chest (still better than working retail ), I can’t handle it.
    I am a chronic people pleaser and I mask continually so I am very good at being compliant in the moment, but the aftermath is a hell I can’t articulate, I hate myself and the experience, and this is being treated decently- I would dissolve utterly if someone was intentionally cruel, I am so unbelievably sorry you had to experience that.
    So few people know how isolating and scary our reality can be, and this is why it becomes almost impossible for us to get treatment of any kind.
    It seems some days an unbearable dilemma, and it never seems to get any easier…
    I wish you all the luck and blessings in the world, and I hope you find a comfortable way to exist in the world somehow…

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    • “…I am reasonably intelligent and able bodied and people cannot understand that I would have any issues at all, it is extremely lonely and alienating and I have too many days to count where I simply want to disappear from the world. Not die, I don’t want to die, I just don’t want to be HERE, forced to do things every day that assault my nature and sensibilities so deeply that I literally don’t want to BE;…”Pariah Mouse-I deeply resonated with your words just now. ESPECIALLY: “forced to do things every day that assault my nature and sensibilities so deeply”

      It was almost like finding a soul mate. Thank you.

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  11. I am appalled by the way you were treated, in a totally vulnerable situation. Unbelievable that health care personnel could be so, well, mean. Glad you got away from them, sounds like a wise move. That said, you’re an amazing, gripping, articulate writer. Borne along as though by strong wind, I couldn’t stop reading.

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  12. In times like this I frequently hear the words “You people can’t just walk in here like that.”Your kind needs to realize that you are not entitled. This facility is for decent people, and if you are really too dense to understand that does not include you we will be happy to have the police explain it to you in the only language that your kind seems to understand”

    The last time that happened I had a broken ankle.

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    • Omg Jim! Did they literally say those exact words? I mean they only IMPLY that kind of thing to me. But they’ve never actually been so obvious to me.
      I believe you & it’s actually kind of refreshing that they are starting to be so transparent. This outward politically correct BS, while continuing to treat marginalized people exactly as always—horribly—is just condescending & insulting to our intelligence

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  13. How well do I know and understand a medical system and system of “therapists” who assume the worst about those who have mental and physical disabilities. I have learned that I don’t have the same rights as other people to respect and to be treated with dignity. My narrative of my conditions mean little to them and plainly, many of these professionals tear you down when what is healing rarely happens. It does take great courage to even be seen by them, great courage to live and being judged when you are asking for help is almost too much to bear.

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  14. Words harshly spoken from the very people we need to trust, learn from what trust is has curdled my life also. Knowing that others are also damaged by this behavior is so oddly comforting Reading your words so well expressed,my heart applauds you and looks forward to you sharing more.

    Perhaps I will find a voice for myself from your example of courage.

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  15. I experienced the same kind of callous treatment when I was committed to the state hospital at age 16. The staff there always seemed to find things to pick on or laugh at an to have no concept of the importance of a positive environment in the recovery from mental illness. I remember I told one I wanted to go to college. He laughed at me, and said he doubted I ever could do that (I have two college degrees), mentioning several problems I had earlier. Even when I wanted to go back to high school, the staff there expressed doubts I could (I graduated 5th in my class). It came from both the non-professional and professional staff. Whenever it happened, it always upset me. It was part of a total experience that was overwhelmingly bad. Please read my accounts of my state hospital experience if you want more details. See Mad in America: “State Hospital Memories: More of my Experience,” and “Committed at 16: State Hospital Memories.”

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    • The best source for how patients were treated in old state hospitals was Canadian Sociologist, Erving Goffman’s, “Asylums.” He mingled among patients at St. Elizabeth’s Hospital in Washington, D.C., trying to learn from them what they experienced. What he found was that staff uniformly belittled the patients, in hopes of making them feel “helpless” and extinguishing whatever will power they had to resist their control. The staff also had very negative views of the worth of patients, justifying their abusive treatment. Instead of an accepting and encouraging environment to further patient healing, they created just the opposite. It followed long-term negative attitudes towards the mentally ill going back to the middle-ages where they were regarded as “creatures of the devil” and chained up. Tragically, some (or perhaps many) of those working with the mentally ill still retain some of these attitudes. This is particularly true in public mental health settings and large hospitals.

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    • The first time I saw a shrink, it was an outpatient appointment. I felt like he didn’t believe I was in distress. I tried to suicide a that night. I was admitted inpatient by ER doc. The second time I saw him, which was when he saw me on his rounds, a few days after I had been admitted, instead of apologizing for not believing me, he accused me of lying to him. The first thing he said was, “Hi there! I remember you. You thought you tricked me, didn’t you?”
      I went to him out of desperation. I was in pain. But I was 17, from a family who forbade expressing anything other than obedience. So it was not my fault that he, as a trained adult seasoned professional in his 50s couldn’t tell I was suicidal.
      But he not only blamed me for his incompetence he punished me for it.
      The second thing he said was, “how are you doing here?” I said, “my tummy hurts” as any innocent child would say if they were in a mental hospital scared and alone.
      So he said, “I know a great pill for tummy aches. It’s called melaril”. I took it and after a short while the paradoxical effects began. I found a sharp object and my SH began. Then other feelings, thoughts and behaviors that I’d never happened before started happening. I was labeled & have been disabled and basically institutionalized ever since. (I learned later that melaril was an antipsychotic) (it was pulled off the market for cardiac issues years later)

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  17. This doesn’t surprise me in the least. In NY state the Dr’s are beyond arrogant. I can’t tell you how many Dr’s offices I’ve been trown out of for standing up for myself. Thankfully I’ve always been outspoken and loud. And trouble doesn’t scare me. With that said having been in a relationship with a medical student from day one until her ER licensing I learned a lot. Never just trust a Dr. Because they said so! In the ER patients are called Gomers
    Get out of my emergency room.
    You need to bring an ally with you. A good friend. Because your usually at your worst when u go for help. You need someone that yiu give authority to speak for you. Here in FLA Naples so far the Dr’s and staff cldnt be nicer and accommodating.
    Don’t give up on youself. It’s not your fault.
    God Bless and Merry Christmas ❤️

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    • You are so right to say, Have an ally or friend. I was in this system enough to know their power ploys and eventually got my M.A. in Counseling and Professional Life Coach certificate. I had a client who asked me to go to her G. P. doctor as he was prescribing her medications that made her ill and she knew my position on
      Knowing the possibility of ego-butting the doctor might present, we decided to say I’m a caregiver and friend. So what do I know? Nothing.
      She was right about her doctor. He lit into her with massive scolding and criticism because she tried the medication and ended up bleeding from the rectum, vomiting and often too sick to get out of bed. Sure enough his words were,’
      “You didn’t even give it a chance to work! You might have to go through some discomfort for a few months, six months at the most! But you have to give it chance!”

      By this time she was in tears, full of guilt and shame for not, “trying”! I had to speak up.
      “You said she has a brain chemical imbalance and needs this medication for balance. How do you know how much she needs of dopamine or serotonin? Do you measure it? ” (I know they don’t).
      Now he turns his hostility to me. “I’m here for Mary! I’m doing what is best to her!” (like butt out). Now I’m getting angry at his attempt to cover up his dishonesty. He doesn’t know).
      “I’m here for Mary too! She’s told you how sick she gets and yet you insist she take this anyway. You have no proof of the cause of her anxiety and depression and the notion of brain chemistry imbalance has never been proven.”
      At that he said the session was over and for Mary to make another appointment without me! (LOL).
      He went with us to the front desk to make sure she made another appointment.
      Here’s the good part. He looked at me and said with some uncertainty, “In med classes, were are just told, for Anxiety and Depression, prescribe these medication”. He implied no one ever questions it, they just do it. At least he gave it some thought.
      Ron, you give me an idea and something I will do and others might do too.
      Give classes in how to talk back to your psychiatrist, G. P. , counselor etc. if need be…
      Many thanks to Robert Whitaker for doing this much needed investigative work and setting so many otherwise, captives free.
      Merry Christmas Indeed!

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  18. This is so relatable!! I am so thankful that I’m seeing more of these stories, because I already knew how pervasive it was. I stopped going to doctors after I had my son four years ago…not on purpose, mostly terrified. The follow up appointment was while I was with my son in NICU, and the doctor’s office never bothered to reach out or reschedule. I certainly wasn’t going to call *them;* I never wanted to see any of them ever again. And it sucks that that’s a possibility in 2020s; how did that happen?? Sick care, not health care. Giving the most shallow solution you’ll accept. There are good professionals out there, but few and far between, and either don’t take insurance, or not Medicaid.
    Women have to be advocates and protectors of our own wellbeing. Men started including women in western medical research because they’re legally required to now, not particularly because they wanted to. We know our own bodies more than anyone else ever will. Keep trying different doctors until you find the right one. If they’re not comfortable answering questions, find one that is. In the US, medical care is a consumer’s world. Take your insurance’s money elsewhere lol

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  19. Yes but it doesn’t end there, does it? Police must have access to records so ever time you complain about a serious incident it’s brushed aside because you’re “delusional “. Then when they finally find out what I’m saying is true they’ll wonder why I won’t cooperate. Because they’ve, along with perpetrator, made life hell. And I don’t want to be part of the “we need your help in return for…” bull again. Once bitten, twice shy. They look after their own.

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  20. I know whereof the author speaks and the shock and pain in finding hospitals that claim to be asylums are really just places of abuse, damage and cruelty is immense. I’ve been bruised and battered by nurses forcibly restraining me, as punishment, yes!, as punishment for leaving a room where they had physically prevented me from leaving. They then told me I wasn’t in seclusion…”It’s only seclusion when we call it seclusion” but when I walked away, in a moment when my guards had left, and walked calmly down the hall and back, they pounced and pinned me down in four point restraints, which they maintained me in, even after I fell asleep, for 19 hours. And why? “Because you don’t follow directions” was the only reason they could give me.

    It was only when I truly understood the sad and terrible truth that hospitals and psychiatric personnel are NOT there to help people, that they use their power to subdue, dominate and subjugate the vulnerable who make the same mistaken assumptions I always had, and that healing must come from within, it was only then that I began to recover. Like other commenters here, I now understand that a diagnosis is only an opinion, offered in the form of a judgement and a damaging label, from one person of another. That the dx is made by a doctor or a nurse doesn’t make it less “just an opinion,” often colored by that person’s personal history and whether or not they like a given patient. I don’t use or believe any label any longer nor do I consider psychiatric dx to be more than an insult, an attempt by one human being to control another human being.

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