A thousand little indignities: what it means to be “a service user”

[TWs for suicidal thoughts, suicide methods and poor mental health care experiences] Last week a relative I haven’t seen in years watched my hypomania vlog and afterward felt moved to “give me some feedback”. I was interested in his thoughts, as I’m still very much a novice at video editing. It turned out we were at cross-purposes: he actually wanted to offer me “feedback” on my understanding of and response to my bipolar disorder. He seemed to feel, based I think on childhood perceptions of me as “the clever one” of the family, that I was basing my management on what doctors and the authors of books had told me to do. His idea was that I should stop trying to dampen my elated feelings and borderline psychotic thoughts and enjoy and listen to them. I kept trying explain how dangerous my mood states could be for me but found the conversation more and more upsetting. I ended up saying that my three decades of living with bipolar made me more of an expert on myself and my condition than any psychiatrist could ever be, so I was certainly not going to listen to the interpretation of a “civilian”. That’s not a word I would normally use and afterwards I wanted to explore where it had come from. Although my relative may have some mental health issues/experiences (in fact I think he may even have a form of bipolar, although seemingly a softer one) he has no clear idea of what it means to be “a service user” and how powerfully this has affected my life. It seems to me as if I have been hunkered down in the trenches, trying to survive both my condition and services that are sometimes the opposite of helpful, for all of my adult life. The advice of my relative felt like the commands of a young army officer fresh out military academy, well-meaning and with some feeling for strategy, but possessing zero combat experience. Of course, not all service users have the same experience. For example, I have been able to stay out of hospital and will therefore never understand the experience of those who have been hospitalised, particularly those who have had multiple admissions and/or who have been involuntarily detained. Yet it feels to me that there is some sort of shared camaraderie between people who have a diagnosis of a long-term, serious mental health condition, and/or have made extensive used the mental health system, and that this is composed of having suffered a thousand little indignities perpetrated against us by the system, by society, by families and friends and workplaces, by our own brains against us, that leave us battle-hardened. For me, being a service user means: The indignity of powerlessness within services. The massive power differential between me and a professional with the power to detain me, even if they have no intention of doing so. Having been threatened with detention unless I displayed appropriate behaviour. Having a single professional’s scribbled notes from a twenty minute conversation carry more weight than my decades of lived experience. Having my diagnosis and treatment plan changed without telling me, never mind asking. Struggling to challenge that or to remove inaccurate details from my record. The indignity of powerlessness over my condition. Experiencing so many episodes over such a long period that I often feel powerless to treat, contain or control my symptoms. Knowing that my experience of mental ill health will continue into the foreseeable future, that it will not “go away”, it will not be cured, and I will never completely recover. Knowing that every time I think I have understood my condition and symptoms I have been proved wrong, wrong, wrong. The indignity of being unable to trust my own brain. Having it distort my thinking so I can see no good in myself or the world. Having it disrupt my senses so that I see and hear things more intensely or smell things that simply are not there. Having it make me behave in so many ways I would later deeply regret. Having an irrevocable gap open up between what I know to the truth and what I believe to be the truth, and feeling ashamed of this. Never knowing when it will happen again. The indignity of reasonable behaviour or core identity issues being classified as a symptom. Knowing that becoming angry with or swearing at an uncaring and unhelpful member of staff will be seen not as an understandable reaction to being badly let down, but as “bipolar irritability” or “challenging behaviour”. Knowing that pushing for an answer where none is given risks being branded as “difficult” and “attention-seeking” and perhaps as attempting to “split” the staff group. Knowing that not being heterosexual and having moved through more than one label has been seen not as normal fluidity of human sexuality but as an “unstable sense of self”. The indignity of poor services. Like every other service user I know I have had crass, unfeeling or otherwise unpleasant encounters with apparently uncaring psychiatric nurses, GPs, A&E staff and psychiatrists. I have been promised referrals that were never made. I have waited in crisis and not received a promised call back. I have turned up as instructed to be told that no one knows who is supposed to see me. I have waited months for an identified treatment only to be told there is ridiculous amount of time to wait or, as with my first therapy referral or my current onward referral to a tertiary service, I have just been left hanging, with not even an estimate as to how long I should expect to wait. The indignity of medication. Side effects which continue to impact upon my work and home life and have included sedation, confusion, dizziness, insomnia, hallucinations, diarrhoea, constipation, weight gain, breast enlargement, nausea, vomiting, agitation, extreme thirst, high blood pressure, stuffy nose, agitation, mood switching from depression to hypomania. Taking months to come off one drug and cross-taper onto another. The indignity of not being allowed more than a month’s supply of anything in case I overdose, although I haven’t for years and years. The indignity of feeling like I have to beg GPs for useful drugs my consultant happily prescribes (especially benzos!). The indignity of having to do things I don’t want to do, to try to stay well. Taking those drugs despite knowing they will make me feel awful in other ways. Going to bed early when everyone is up late. Declining social invitations or work tasks because they will impact on my mental health. Only ever being able to work part time so I have time to recuperate in my days off, and having to turn down exciting opportunities. Having to say no thanks to a second glass of wine. Having to slow things down when I long to go fast. Having resist what feels good. The indignity of loss. Loss of educational opportunities. Loss of two beloved careers, loss of my dreams of success. Loss of income and economic independence. Loss of friendships (especially work related). Loss of my sense of the self I was when last in remission. Loss of my dreams of being the kind of mother I wanted to be, and loss of my ability to care for my children full time. The indignity of losing a relationship of equals with my partner when he has had to become my “carer” rather than my lover. The indignity of stigma. The knowledge that even accessing community services may raise an eyebrow at work, at parties, at family gatherings, or even in other health service contexts. Taking drugs that are negatively labelled by others, seen as “happy pills” by one group and a “chemical cosh” by another. Cringing at lurid headlines that scream, “mental patient” in connection with violence. Reading surveys that suggest a sizeable minority of people do not want people like me to live next door to them, work with them or look after their children. The indignity of opinionated ignorance. Sadly this applies to both “civilians” and those trained to care for us. Being told that I should be happy, that I should revise my expectations in not wanting to suffer, being told that everyone suffers and I am not special. Being told that bipolars don’t experience emotions any differently to anyone else but simply lack coping skills. Being told that my suffering is “feeling sorry for myself”. Being told that I should be better now because I am, “in treatment”, “on meds”, “in therapy”. Having my physical symptoms ignored by secondary services and my mental health symptoms treated as scary by primary care. The indignity of being disapproved of. Disapproval of my coping strategies even though they are all quite legal. Disapproval of my overeating, my overwork, my overspending, my oversleeping. Disapproval of my choice to take medication at times. Disapproval of my choice not to take medication at times. Disapproval by some of use of services at all. Disapproval of acts carried out or things said when depressed, when manic or hypomanic, when in a state of panic, when delusional. Disapproval of having suicidal thoughts when I am young, have kids, have a lovely partner. Feeling subject to disapproval for “failing to respond” to a drug or a therapy that is successful in others. The indignity of wanting to die. Not having fleeting thoughts, not now and then wondering if I might be better off (or those around me might be) if I were dead. Not simply wanting everything to stop or wanting to go to sleep and not wake up again. Genuinely wanting to die and being reduced to an inability to think of anything else, feeling that I am being kept here on this plane against my will. Spending all day every day evaluating and re-evaluating methods and timings. Running through the methods that make sense to me. Standing, watching tube trains pull into the station and wondering if I should jump now, or now, or now. Avoiding the kitchen because I know I can’t trust myself around knives, avoiding the bathroom because I can’t trust yourself around the medicine cabinet. Looking up at a skyscraper and wishing I could get up there to jump. Wishing on a star to be gifted with a heart attack, a fatal stroke, a blood clot in my brain. Thinking about my will. Tidying up my finances. Thinking about writing down my Twitter password so that my partner can let my online friends know what has happened to me. Planning my funeral. The indignity of emergency treatment. Having to give up and admit I cannot keep myself safe. Grovelling on the floor of an A&E cubicle puking up charcoal. Being tethered to the bed by an antidote IV, a young and otherwise healthy woman in a medical ward full of older people who are genuinely sick. Having to tell my suicidal feelings to a stranger who is not really listening. Having to wait for hours to see the duty psychiatrist in a foyer with a permanently open door on a freezing November afternoon. Being assessed in a few minutes and handed a bottle of antipsychotics and being sent home under the care of my partner. Again and again. And so I am glad for my relative if he has never experienced any of those things, or only one of two of them, rather than the whole menu. I have suffered enough; I would not for the world want him to have spent twenty or thirty years suffering these pangs of indignity. But I reserve the right not to be judged or advised by those who have never seen the trenches.

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About purplepersuasion

40 something service user, activist, writer and mother living with bipolar disorder. Proud winner of the Mark Hanson Prize for Digital Media at the Mind Media Awards #VMGMindAwards 2013. Winner of the World in Mentalists Mood Disorder blog 2012. Regular guest blogger for the International Bipolar Foundation http://www.internationalbipolarfoundation.org/ Expert by Experience working with Mind training department. Working on The Incoming Tide, a bipolar memoir. Find me on Twitter @BipolarBlogger or at my Facebook page http://www.facebook.com/BipolarBlogger
This entry was posted in Activism, Mental health, Mental health services, Stigma and discrimination and tagged , , , , , , , , , , , , . Bookmark the permalink.

66 Responses to A thousand little indignities: what it means to be “a service user”

  1. Reblogged this on Pepper Hadlow and commented:
    She’s covered a lot of territory here, and though it’s a bit of a long read, it could have been much longer. This is almost a manifesto, a well-done rant, nicely summed up. It rings true to me, even though I haven’t experienced all of it.

    • Sam Candour says:

      I too have experienced quite a few of these, plus of course being reported to the NSPCC because I am a mother with mental illness. I’m sorry that you’ve had so many bad experiences but I’m glad that you speak out, for all our sakes.

  2. Somebody says:

    Quite a few of those, I can relate to, having the lack of power over your own care, knowing you can be detained by someone who barely knows what is going through your head, having to rely on meds, side effects of meds appearing to be a second mental issue, being a bright kid with a loving family and wanting to die, retching all through the night in an emergency ward full of people who have serious physical conditions, losing years of education (I should be at uni) the list is almost endless.
    You put it so well. Thank you.

  3. ianknabel66 says:

    Wow Charlotte, where to begin….

    Reading this I felt like I was looking inside my own mind. You have absolutely nailed the feelings that so many living with mental illness have on a daily basis.

    All I can say is stay strong and true to yourself. You have an insight to your condition that no one else can ever have.

    Great read and thanks for sharing. It provides some level of comfort knowing others are in the same boat

    Ian Knabel

  4. Somebody says:

    Reblogged this on silentscreamsandfakesmiles and commented:
    Charlotte talk about the all the various different things it means to be a service user and sadly they are all true, I have experienced quite a few myself.

  5. libertasbpd says:

    This has had me in tears because I feel and have experienced so many of these things myself. My BPD diagnosis might be relatively young but since i was 13 I’ve been in this system. Now as a 35 year old mother and wife I am having to tell people about all the things I have done. My scripts are all on a weekly basis now which is so embarrassing and a constant reminder of how I can not be trusted. I get looked at as though I am making things up and the only time is when I break down in tears amd reveal some more personal devastaion from my past that makes me feel even more vulnerable. They ask probing questions that are cold and clinical that make you want to run out of the room. Do they really think that seeing them, have them check my cuts and latest OD attempt is fun???

    I have only just told my psychiatrist that i am bisexual….her response was interesting but it was duly noted in what will probably be an inaccurate recording of what was said. It’s yet another label to go with all the other ones I have. I relate so much to all you have said and wish more than anything that mh illness did not mean people coming together because of their shared bad and depressing treatment by society, but instead was because we are treated as human beings who have a slightly different wired brain which requires compassion, patience and understanding. What a world that would be!!

    Sending you my love and hugs and wishing you well. Sorry for my ramble!! Xxx

  6. camhstoadult says:

    Yup. Couldn’t agree more.

  7. Reblogged this on A Modern Ukrainian and commented:
    Yup yup and more yup

    “The indignity of being disapproved of. Disapproval of my coping strategies even though they are all quite legal. Disapproval of my overeating, my overwork, my overspending, my oversleeping. Disapproval of my choice to take medication at times. Disapproval of my choice not to take medication at times. Disapproval by some of use of services at all. Disapproval of acts carried out or things said when depressed, when manic or hypomanic, when in a state of panic, when delusional. Disapproval of having suicidal thoughts when I am young, have kids, have a lovely partner. Feeling subject to disapproval for “failing to respond” to a drug or a therapy that is successful in others.”

  8. MrJones says:

    thank you and I pray for all of us!

  9. Diana says:

    “Knowing that every time I think I have understood my condition and symptoms I have been proved wrong, wrong, wrong.”

    Do you mean that you think your diagnosis is potentially incorrect if the symptoms are not fitting with BP and you have something else that isn’t bipolar?

    • Oh gosh no! Not at all! What you need to understand about bipolar it that it is a *highly* complex and varied condition. It has so many possible manifestation that everyone has a pretty much unique symptom profile – like shuffling a deck of cards and dealing everyone a hand. Even particular mood states, for example can manifest in many different ways from person to person and episode to episode. Take hypomania. It can be elated or it can be agitated. If agitated it can be mostly irritable or mostly anxious. If mostly anxious it can (but may or may not) involve hypervigilent insomnia, nightmares, psychomotor agitation (pacing, jiggling, tapping, inability to rest or sit still), panic attacks, dissociation, sweating, shaking, crying, digestive disturbances, hiding, running away….I could go on and on. That is just ONE example of ONE potential manifestation of ONE mood state. Then true mania, depression, psychosis and mixed mood all have as many or more potential variations, so that every person’s experience of them will be a little different. And people’s behavioural responses will also differ. Some overspend when high, some don’t. Some have problems with fidelity, some don’t. Some self-harm when low, some don’t. Some use substances to cope when low, some don’t. There there are differences in how quickly people “cycle”. Some stay in a mood state for months at a time, while very rapid cyclers can move back and forth between mood states within hours. It’s almost infinite! But ALL falls within the label “bipolar”. So all I meant was that whenever I seem to get to a point of confident understanding how *my* bipolar seems to manifest itself (like thinking, “Well, at least I don’t get rapid cycling!” up until about February this year…!), it changes. My “knowledge” is proved wrong. The deck has been shuffled and I have to try and make sense of the new hand I have been dealt. But all very, very much bipolar.

  10. Kiera Naylor says:

    We do suffer so many indignities, very well said and sadly true.

  11. Victoria Epps says:

    http://www.naturalcuresnotmedicine.com/shaman-views-mental-illness/

    Hi Charlotte
    My illness is currently in remission but I had a very nasty episode last year and can relate to so many of the things you have written about. I am now exploring some alternative options but it is hard to break away from the fear instilled by Doctors and their ‘my way or the highway’ approach. I hope you will be feeling better again soon Charlotte.

    Best wishes and I hope you can read the article. X

  12. Alex Dale says:

    Wow, very well put. I would hold a different opinion than yourself on a few things you talk about on your blog, but this article has nailed the point (s) very accurately. I am 22, I have a diagnosis of “affective schizophrenia”, am seen as “challenging”, because of medication induced outbursts in hospital, (this usually equates to “potentially dangerous” in certain people’s minds which is something I take deep offence to. I also take offence that “challenging” is also seen as threatening, I can’t help but feel they’d prefer us all as docile drones, but treating mental illness isn’t as simple as that. We are complex people and we are people with personalities, preferences, loves, hates, and many shades of grey. Too often I feel this is not appreciated or acknowledged within services.

    I’ve had a lot of indignity in my (short ish) life.. Forced treatment, being refused stitches for gaping wounds, a very lengthy hospital admission, forgetful CPN’s lacking in compassion and basic human empathy, shallow assumptions, not being listened to, constant frustration that I’m “not better”, being coerced into education/work/looking for “something to do” as if I am just choosing to live on disability benefits for no good reason.. The list is endless. Of course, your summary covers it well. Thank you for posting this, and thank you for being a voice for those who are too often silenced.

    • You know, every post that I write about the horrible stuff, I struggle to know how to feel when people relate to it…Obviously part of me is pleased that I’ve been able to write something that lets people know they are far from alone with these things… yet at the moment I also feel quite depressed and defeated about how universal these experiences appear to be. I keep trying to effect change in my small ways (the next one I hope will have a real impact is devising and delivering mental health training for GPs who sit on Clinical Commissioning Groups) but it just feels like too little. I feel like we need a revolution! But I don’t know how.

  13. A fantastic article Charlotte, Thank you! 🙂

    Sadly every single one of your listed indignities resonate with me all too well. What people often don’t realise when they commit these indignities is that they are compounding the suffering we are already experiencing. They invalidate and demean us and increase our pain. True understanding of mental health is extremely hard to come by.

    Aimee x

  14. rosewiltshire says:

    In particular, I can relate a lot to the category of opinionated ignorance. A lot of people have upset me recently labelling me as “negative” and “unwilling to change”. So much judgement & my opinion based on my experiences counts for nought in their eyes.

    Thank you for speaking out about the outrages we endure.

  15. lstclairallen says:

    Reblogged this on Mad Cows Need Love Too. and commented:
    Somebody pass me the tissues, a POWERFUL read.

  16. fiona says:

    I am truly sorry for the bad experiences you have had in the hands of mental health professional and as I psychiatrist who manages BPD I will try not to repeat them. I have a bipolar disorder that luckily responds well to medication and although I have suffered mania, a mixed state and severe depression in the past I am now in remission. I don’t have side effects from my medication but do worry about what the drugs might be doing to my body long term. I do however have to run my life like a military operation to remain well with regular bed times and medication that I have to take in the pub or restaurant toilet at 10pm if I go out. I also have to work part time which limits what I can achieve in my career, can’t do adventure travel and generally have to avoid over stimulation. All this limits me socially and because it is an invisible disability is hard to explain to people. I have lost friends and one relative who is a nurse does not understand the concept of remission so thinks that I am permanently bipolar and too fragile to visit her in South Africa since I told her. I visited before and she doesn’t see how I could have concealed my illness. On the plus side I have a loving and supportive partner and my only friends are of the good sort who can understand and accept my BPD.

  17. jemmabrown says:

    Reblogged this on Through My Eyes and commented:
    Wow it’s amazing I’ve read this today after the day I have had of being treated as a ‘service user’ rather than a human being!

    In a way refreshing to know I’m not alone in sometimes being treated like some form of subhuman by so called professionals!

  18. steveflatt says:

    Thank you! This is a great post. Full of experience and insight and really shows how a person is the expert in their own lives. It shows how we “experts” have to learn to be curious, respectful and ‘not knowing’ when we work with people who come to us for support, comfort and occasionally an opportunity to help. The evidence is overwhelming that drugs, psychotherapy and a patronising attitude have to be used with great care and thoughtfulness. Too many ‘experts’ assume that they know best. Assumption of rightness is not science, it is not respectful and it is not effective. Listening and hearing, asking the right questions and helping the person to discover their own ideas and answers using their own considerable experiences, skills and qualities in their own lives is key; providing a series of manualised interventions or a simplistic drug regime is no solution to the complexities of a person’s social, biological or spiritual make up.
    Professionals working with any form of psychological distress should read this blog and digest, but I guess so many of them already know better and will think they don’t need to!

  19. I can relate to so much of this that my heart is almost beating out of my chest just reading this. In particular, I know the indignity of being treated on a medical ward (following an OD) full of ‘sick’ people. Ripping the IV from my own arm, demanding to go home and being threatened with sectioning if I refused to cooperate.

    I’m so sorry that all of this is something you have lived/are living with but I can’t stress enough how much I admire your ability to put it all down in words and advocate for those of us who feel unable to speak.

    Don’t ever stop what you do x

    • Oh gosh, lovely, that is EXACTLY what happened to me, I was about to rip the cannula out because I was desperate to go home and the hitherto nice junior doctor said he would call psychiatry colleagues from the adjoining MH wing and have me sectioned! And thank you so much for your lovely comment, I am at a low ebb this evening so that really helped xxx

      • Alex Dale says:

        I took an overdose whilst I was on a section 3, and was admitted to a general ward for hospital. I think that was probably one of the worst couple of days in my life, and the indignity of it still makes my stomach turn now, 2 years on.

        I went to A&E late at night, waited for 2 hours in a locked room with 2 support workers who insisted I wouldn’t be staying anyway, and chatted amongst themselves. When blood tests were returned, I had to accept treatment as my levels were far too high. I had a psych support worker on watch by my bed all night and day whilst I was throwing up and crying for my mother. She just stared at me and kept flicking through her magazine. They moved me at 5 in the morning, I was wheeling my drip to another section of the hospital, totally exhausted and still crying. I had to be watched in the toilet by 2 people, when I was still attached to a drip, and couldn’t even pull my own trousers down.

        The girl in the bed next to me had serious physical disabilities, and I felt so ostracised by my own suffering that I was wishing I was her. I discharged myself AMA (and they let me go) “because I had capacity” which makes no sense, as I was on a section 3! However, what else could they have done, section me??

      • Oh Alex, I am so sorry to hear this. I will never get used to hearing about A&E staff treating people who have OD’d, self-harmed or attempted suicide in such a callous way. I don’t understand how one human being can just look at another who is in such deep distress. The fact that the onlookers are paid to “care” for those they just look at makes it all the more terrible. Thank you for sharing that x

  20. Steve Furber says:

    Charlotte, I think you should train as many people as possible, especially GPs!
    Are you happy for me to print off copies of this blog so that my team of “professionals” are able to discuss it? It’s so important that we take your all too illuminating insights on board…

    I really appreciate the honesty of your tweets/blogs.

  21. petiteandprettyco says:

    wow well written!

  22. Lauren says:

    Charlotte, wow! I am an ER nurse and it is so helpful to have your story in my mind when I care for mental health patients in crisis. It reminds me to be compassionate and non judgmental, and I so often fail at both of those things in life let alone in my nursing practice! It’s hard when you are lied to, manipulated, hit, bitten, and threatened by other patients to not let a crusty, hard shell grow around your heart. So when we act like that please know that we feel like “service users” too sometimes! You are an extraordinary woman, be strong, and keep writing your powerful story!

    • Hello Lauren, I really do get that, I worked for a short time in frontline acute care and then spent many years working in the probation service, much of it with repeat offenders who often had substance misuse and mental health difficulties, often with underlying personality issues due to terrible childhoods. I’m not pretending that I managed to hold them in unconditional positive regard all the time. But your comment makes me feel you still haven’t really got what I was saying. You need to consider that if you feel “got at” by patients, you can leave – we can’t. If you feel badly treated, you go home knowing you will at the very least be financially rewarded for it. Whereas we are often badly treated by people who are paid to be kind to us! You have power in the system, a lot of it, and maybe you forget because you feel like you’ve been abused, but you have it where we might have none at all, and frankly it is what you signed up for. I never signed up for any of this. I think you also need to consider this fundamental fact: it is not our job as service users to care about staff members’ feelings. In fact, we may be in so much distress, or have been so traumatised by services that we are simply incapable of doing so. Either way, you are paid to care about us, and we are not paid to care about you. It is not our problem if you have been “lied to, manipulated, hit, bitten, and threatened” by others. Your job is to forget about the others, and see me for who am. Can you take that extra step of self-examination?

      • Lauren says:

        Thanks, you’ve given me a lot to think about. I think you’re right, I certainly have the option to go to work and you don’t have the option to go through all this on a daily basis. I only meant there is a certain, I don’t know, barrier that is up sometimes in automatic human self-protection, but if grown too thick it doesn’t allow empathy and compassion to go through to others. But you’re right I think I have a lot of examining of my own heart and preconceptions to do.

      • Thank you so much, all I really want is for professionals to try as I used to try to *not make it about themselves* and retain the focus on client/patient, you know?

      • Lauren says:

        Definitely. And this of course is the continuing tension in myself when I go to work: Do I want this day to be easy and just get through it, or do I want to really serve and not care how hard it is as long as I made a difference in someone’s life? I’ve found only with God’s help can I let go of that selfishness, and he often uses pieces like this to “hold up the mirror” to myself. Thanks again for all your thoughts. Powerful stuff.

  23. I really agree… this was great.

  24. Brilliant…every thought and feeling here is dead-on accurate. Most people with bipolar have dealt with mood fluctuations from a very early age (long before being “diagnosed”) and understand themselves in ways civilians never get. I’m so THRILLED this post has been Freshly Pressed because awareness and understanding is sorely lacking for “service users”
    My son (30 yrs old) deals with the issues you’ve presented all of the time. He KNOWS his self-reflection and self awareness is on point but is constantlly second guessed at psychiatry appts, which is beyond annoying to him. However, these docs hold the prescription pads and the meds they prescribe mean the difference between him retaining his great career or flushing it down the toilet. He grins and bears the indignities but leaves the Doctor’s office feeling belittled, ignored and cowardly. Terrible!!
    Bravo to you for having the courage to write this post!!!!!

  25. sarahkreece says:

    Revolutions can be the smallest of things, like telling the new kid in the room next door that the will get out of hospital again and this won’t be their life, or someone who’s psychiatrist is stressing them with terrible advice that they don’t have to listen, they can go get a second opinion. x

  26. V says:

    Great read. I felt myself getting indignant as you talked about your relative. Hypomania is more than just feeling optimistic or happy…if it wasn’t in some way destructive, it wouldn’t be classified as a psychological ailment! Also, I 100% agree with the indignities associated with having a stigmatized condition. You’re absolutely correct in saying that even normal behavior (like reacting angrily to an unhelpful worker) will be interpreted in light of having bipolar disorder.

  27. Canyoufeelit says:

    I agree with all the other comments, this is a very good article and very accurate. My sister was diagnosed with Bipolar disorder years ago and reading this was like looking back at her life, words and thoughts. She took her life a few months ago. I want to write that what I never fully expressed to her or maybe I didn’t express it enough was just how happy she made me just being in her presence. Yes times could be difficult but I don’t think she understood all of the positive things about herself and the way all of her vulnerabilities made her a person that so many of us cherished. She had such compassion and understanding even though it wasn’t given to her by many. Supporting her wasn’t easy and like you explained here wasn’t with the assistance of the healthcare community but I did it because I loved her more than I could ever express. I hope you and everyone else that relates to this will remember the great strengths you all have also. They really aren’t diminished and forgotten.

    • This is such a moving comment, thank you so much for sharing your sister’s story and I am so very sorry you are having to live without her now. It’s so easy to get ground down by the system, as if we weren’t ground down enough by our own minds, and I know how hard it has been over the years for first my ex-husband and now my current partner to have to support me. My heart goes out to you xx

  28. annaartiga says:

    Maybe he was just trying to say embrace and accept your emotions and allow them. He doesn’t understand that some conditions like bipolar have this ever intensifying flow of emotions that doesn’t settle by just letting them out. There is a safe technique when with your psychiatrist in a safe room to expose those raw emotions, but even then it can be hard to come back from. Relatives are well meaning but often looking from their heart for the quick answer to get you relief 🙂 but in everything the quick relief never stays fixed long 🙂 Good job writing about your feelings and sharing helps others 🙂 Hugs, Anna

  29. roughghosts says:

    Well deserved Freshly Pressed! There is so much here that I can relate to. “Service user” is a new term to me, where I live we are”mental health consumers”, as if we decided to shop for services (not that you have a choice – this is a publicly funded system and unless you are rich you wait and take what you can get). After 16-17 years of what I believed was successfully managing my bipolar – raising kids, building a career etc – I have been knocked back big time. When I was released from the hospital after a severe mania and diagnosis I was told to take my meds, avoid talking to others and had no formal follow up. Being able to hear stories you recognize are key to living well with this cruel illness.

    Keep sharing.

  30. thornerosie says:

    Having personal experience of a family member and several friends who have had, and some still do, suffer from mental illness; I want to thank you for speaking out and pointing out the faults in the system that is supposed to give support and be non-judgemental.

    Having physical disabilities myself, many of the indignities you have suffered as a result of being bipolar, carries through to the services offered to people with physical disabilities.

    We all appear to be boxed as job lots and labelled accordingly. Instead of being treated in this manner, we should all be looked at as individuals in our own right.

    I am wheelchair bound, and when out in the public domain with my support worker, people often speak to them instead of directly to me. So again I applaud you for speaking out.

    Take care
    Rosie

    • I don’t why it’s so hard for people to see others as…people! Makes me really sad. As I said to another commenter, it particularly gets me when it’s the very people who are paid to care that instead treat us with disdain. I don’t really know how to begin changing it.

  31. J.E.S says:

    Right On!! Eloquent and oh so true!

  32. I identified with every single thing you said, and that is unbelievably sad. People like us should not face indignities like this. We need help, love, care, support, and understanding, not condemnation.

  33. Selia says:

    This is amazing. Thank you so very much. You’ve put into words pretty much every thought I’ve had while battling bipolar II, the healthcare system, work colleagues, and even members of my own family. And what we go through IS a battle.

    You are a beautiful and amazing human, and words fail as I struggle to find the right words to show just how profoundly this essay resonates with me. This not only deserves to be Freshly Pressed; it needs the front page in every newspaper and needs to air on television repeatedly until civilians (love that!) finally achieve even partial understanding of what we go through every. single. day. Bravo, and again, thank you!

    • Thank you so much for your kind words. I am growing so weary of unsolicited advice that comes from a place of zero understanding of the “trenches” and this outpouring was the result! x

      • Selia says:

        It’s so frustrating! Little do those ‘well-meaning’ (and I think many are in their incredibly ignorant way) people know just complex and labyrinthine these illnesses are, nor do they realize how just ignorant they really are. If I have to explain that depression isn’t sadness one more time, my head may explode… All we can do is educate them. Mental healthcare providers are the most frustrating to deal with, though. They should know better! Argh. Anyhow, you’re incredibly brave, incredibly bright, and I wish you all the peace and calm possible. You’re not alone, and I hope that knowledge is helping you.

  34. Selia says:

    Reblogged this on spirit + mind + cake and commented:
    This essay is on Freshly Pressed, and it is AMAZING. It is a manifesto, and I hope it comforts and empowers you as much as it has me.

    Please read this. You’ll be so glad you did!

  35. Kat Cormack says:

    It hurts reading this because I hate to see what you’ve gone through, and because I relate to every damn bit

  36. I made it through the first two of your indignities and had to stop reading. Not because it wasn’t well written, or because I disagreed, or didn’t understand, or even because I’ve shared your experience, because none of these are true. I had to stop because as a compassionate, empathetic human being I was overwhelmed by the reality of what you’ve shared. I’ve seen just enough in my own circle and understand enough of the medical and mental health sectors that I know the truth in what you write.
    I will read the rest of your story. Every. Last. Word.
    But I’m going to have to take it in doses because the experience you share is so completely visceral.
    Thank you for your courage in sharing this. It’s an area of healthcare that needs significant improvement from the inside and greater understanding from society at large.

    • Carolin, I’m grateful for your comment, but please don’t feel obligated to read the whole post and and please take it at your own pace if you do want to read on. Stay safe. It’s not going anywhere, and nor am I xx

  37. butterflywgs says:

    I relate so much. It puts into words many things I’ve wanted to say, but been unable to articulate without it becoming an incoherent emotional sweary mess. Thank you.
    Maybe I’ll blog my own many examples one day. It’s not even the most egregious examples, it’s the constant drip, drip of gaslighting, that wears us down.
    I genuinely think ‘services’/ ‘care’ has done me MORE psychological damage, having been abused by various people throughout my life :-((
    And we can’t really do anything much about it; we do need the care, so if you can’t afford to go private, what else is there to do?
    Complaining is just going to get us labelled ‘difficult’ and probably with a personality disorder. Couldn’t POSSIBLY be anything the staff had done giving us reason to complain.
    Lauren – I’m glad you intend to reflect on Charlotte’s response to you. I wouldn’t have been nearly so polite and reasonable. Because…see above.

  38. butterflywgs says:

    Reblogged this on Life Is A Question and commented:
    A brilliantly written, heartrending post.

  39. I’m sorry you have been through so much. I’ve been through some of it and can feel your pain. I will be praying for you.

  40. savemefrombpd says:

    This is all so painfully true. I’ve gone through much of the same.

    Change needs to happen. Talking needs to happen, so thank you for opening up the conversation.

    All the best.

  41. Vivienne says:

    2 years ago I was an informal patient in a psychiatric unit due to a horrendous downturn in mood due to my bipolar condition. When I presented at A&E with my husband and my box of pills on a Bank Holiday Monday in May, we were shown, following triage, into the MH Assessment Room – basically a box room with 2 nailed down armchairs and left for 4 hours. No-one asked us if we were okay during this time and my husband couldn’t leave me for fear I would harm myself. In fact nobody had taken away my meds at this point and I was sneakily taking diazepam in the corner to keep myself from ‘feeling’. Eventually a locum psychiatrist came to see me, made an assessment in 15 minutes and then left us again. We were alone again for an hour with no idea what was going on. A young mental health nurse came in to see if I could be admitted to an acute ward and following a long explanation of my symptoms (self-harm, self-medicating and serious suicidal tendencies) and the fact that my husband was shortly leaving on a work assignment he could not get out of, leaving me with a alone with my 6 year old daughter; we were told that the psychiatric unit was not a hotel. At this point I ran out of the A&E feeling help wasn’t available and the same MH nurse turned to my husband and said ‘we better admit her just in case she tries anything to prove me wrong.’ Suffice it to say the story continues, but thank you for sharing your story and making me feel less alone in having to suffer these indignities.

  42. lore green says:

    I always knew that mental health provision in this country is sub-standard but I am only recently realising how bad it is, thanks to people like yourself kindly sharing and eloquently expressing their experiences. I have chronic conditions and I am understanding some of those service-user indignities. x

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