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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