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 minutes 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. Live 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. 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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NEW VLOG! “Like the difference between eating a biscuit and a delicious gateau.”

People often asked me how I know when I am hypomanic. How do I distinguish between normal happiness and something more pathological? It can be a difficult question to answer, especially as everyone’s experience will be a little different.

Last Friday I was feeling very hypomanic, so I recorded my thoughts….

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There are worse things I could do…

There are worse things I could do
Than to gain a stone or two,
Though I know it’s likely more
To be three, or maybe four
There is one thing that is true:
There are worst things I could do.

I could ditch those pesky meds
Leave my mental health in shreds,
So what’s sitting on my plate
Will not cause excessive weight.
But you know, I’ve thought it through,
And that’s a thing I just won’t do.

I could find some other way
Of surviving every day.
I could drink or I could steal,
Find some new way not to feel,
But if food can get me through
Then what the hell is that to you?

[saxophone break]

I could count each calorie
Hoping that will set me free,
Let my bathroom scales decide
If I dare to go outside,
Hiding from the likes of you.
But that’s not something I will do.

I could scorn someone like me,
Make my loathing plain to see,
Say she has to learn that fat
Isn’t pretty to look at
And offends the public view,
But that’s a thing I’d never do.

You may want me to oblige,
Hate myself over my size,
Agree that I have no self-worth
With this cup size and this girth,
But I’ve learned that isn’t true.
There are much worse things I could do.

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Back under Their spell

So here I am back dealing with Them. I’ve been almost entirely well now for five months and had honestly started to feel that I was completely in remission. A couple of months ago I reduced my dose of quetiapine quickly and easily from 750mg to 600mg with no mental or physical ill effects, so it is which shock and disappointment I find that I have not tolerated the drop from 600mg to 500mg well. In the two weeks since the reduction I have felt that I have been very mildly hypomanic for the first time since about March.

I kind of saw the potential for that; I have been taking on more work, and more exciting work, and I’ve been try to balance out the buzz by using PRN quetiapine and diazepam and taking things slowly and calmly when not working outside the home. It is, after all, genuinely exciting to be asked to speak at conferences or to have the opportunity to give a reading from my book. What I was not in any way expecting was a return to the kind of mild psychosis that for all its lack of severity makes me feel out of control. As I write this, it is Monday, and I’ve been feeling at the mercy of Them since Saturday. I’ve fallen right back into the bizarre system of beliefs I was having problems with last autumn; in a moment when I saw a single object I experienced as “sinister”, that belief system has gone from being something I’ve been able to describe in talks and training events with detachment to my present horrible reality.

The really interesting this about this system of belief is that while I am aware that I am generating it, that it is most likely a product of faulty dopamine levels, I feel very strongly that it has an independent existence. I do not create it; it is revealed to me. I feel like an archeologist who whilst looking for something fairly mundane – coins, perhaps –with one scrape of a trowel accidentally reveals a corner of something larger and far more intricate. Further work on the site exposes ever greater complexity until individual areas of tile begin to link together into one huge mosaic floor.

Each of my experiences with Them has, in the same way, fleshed out and consolidated my understanding of how the other dimension and its inhabitants operate. As my brain chemistry becomes more and more disordered I am more and more aware of the effect of aberrant salience, of the brain incorrectly identifying neutral things as standing out in importance (or being “salient”). Long before I had heard of this theory I used phrases such as “increased/distorted significance” because I recognised that at certain periods my brain would start to see things as specially important or significant, and as meant specifically for me, when they really, truly weren’t. In a mildly hypomanic, expansive mood these feel like benign “messages from the universe” that only I am equipped to decipher because I am special. A feather found in the park; a passage in a book opened at random; a beautiful harmony; all these can be positive sorts of message.

More frequently, however, the messages are sinister, frightening and “evidence” that I am in danger. Entirely neutral experiences and objects become messages sent for me to interpret, only the messages are always the same: We are out to get you, and we can, because you are powerless. As I become less and less well more and more things that anyone else would consider innocuous become not just suggestive of Their actions, but the presence of Them becomes the only explanation that in any way makes sense. For example, I went out to the shop earlier, to see if getting out of the flat was helpful, and when I came back I noticed the bedroom light was on. Instead of thinking, “Oops, I left the light on!” my initial, incredibly rapid interpretation was that there was someone in there. Equally rapidly, this was followed by the knowledge that no, there wasn’t anyone in there, but that They had put the light on in my absence specifically to make me think there was someone in there, to make me scared. Because They enjoy that. It genuinely felt like the most likely explanation.

The more experiences I have like this, the more of the picture is revealed and over the past couple of years it has built into the feeling that somewhere, in a dimension far, far away, beyond up or down or east or west, there are Beings, and the focus of these Beings is – me. I am entirely aware that this is both grandiose and ridiculous, but there it is. They may belong in another dimension, but They have tremendous reach into our own. This is fortunate for them as although They cannot manipulate me directly, They can use their reach to manipulate our world in a way that frightens and distresses me. It does not matter that I retain insight, that I “know” at a cognitive level that these things are not true, because I FEEL at a gut level that they are. And gut trumps cognition in terms of the speed at which it works, and in terms of its ability to instantly flood me with the hormones associated with being in the presence of threat. 

They can threaten me through:

Colours. As I fall under their spell I begin to develop a strong aversion to certain colours, to feel that they are risky or even downright dangerous. I begin to feel very strongly that I do not want to connect with the dangerous colours, and will go to lengths to avoid looking at and especially touching them. My choice of pens, clothes, folders becomes dictated by the aversion. Usually the problem is with reds, especially a dark or rusty red, but today it’s yellows, especially ochre. No idea why it’s changed, but it was bad enough today that to feel safe I had to change my Twitter page background.

Patterns and shapes. Especially dark shapes/patterns on a light background. Pointy shapes are the worst, say teardrops or triangles. I have had to get rid of clothes with this kind of pattern before now.

Using technology to trick, distress and thwart me; I’ve covered this a lot in previous posts but right now I’m having ideas about the smoke alarm in the hall (which I cannot move from room to room without passing) being some kind of camera.

Nature. I have relatively recently discovered that They are also hiding their purposes within natural artifacts, BUT letting me know that They are doing this, so that I find aspects of the natural world scary. Previously I was troubled by the idea that the wasps’ nest in my dad’s loft is a monitoring device. Over the weekend as we were driving through the beautiful Worcestershire and Herefordshire countryside I felt, and yes I DO know how bonkers this is thank you, that certain types of hedge were not the work of nature or gardeners, but the creation of THEM. I felt at risk even though I was in the car, because the purpose is never to directly harm me, it is to mess with me be letting me know that I am being observed. I couldn’t bear to look at the hedges, because they were scary; but closing my eyes was scarier, because it left me more vulnerable.

After just a few days of this I am emotionally exhausted; having your eye hook onto so very many “dangers” in the course of a day is just incredibly tiring. I’m also disappointed that I’m this unwell again and that I’ll have to go back up to the dose I dropped down from two weeks ago. But while this is in its early stages I do recognise that the sensible thing is to do whatever takes, go back up, use diazepam, contact my Consultant if necessary to get my appointment brought forward. Even after a couple of days getting out from under Their spell has become much more important than my pride. I cannot face the thought of getting worse.

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Don’t Read His Post If You Hate Fatphobia, Says Wil Wheaton

Originally posted on The Stretch For Something Beautiful:

I’m used to it every day I stand up for myself and people like me: body positive people are blind. They’re ignoring the health risks. Fat is ugly. Fat can be absolutely controlled. On and on and on. And usually, I’m able to let these things roll off my back, because I know that fat is often influenced strongly by genetics, that you can choose unhealthy foods the majority of the time and be stick-thin, and that you can eat healthily and exercise and be fat. I also know that the “health craze” of exercise and weight loss is ableist towards those that will never be healthy and never be able to do extensive exercise. All the “What’s your excuse?” comments in the world won’t change that for those people.

I support health at every size. I support doing what you personally have to do to feel good in your…

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A more accepting age? Why stigma is nowhere near a thing of the past

STIGMA

  1. fig. A mark of disgrace or infamy; a sign of severe censure or condemnation, regarded as impressed on a person or thing; a ‘brand’.

Example: 1882   J. H. Blunt Reformation Church of Eng. II. 172   Branded with the stigma of illegitimacy.

Oxford English Dictionary

 

I’m particularly lucky where stigma is concerned. Despite having had bipolar since early adolescence, generally I have not experienced much stigma and discrimination. Some of it is to do with how open I am (it’s harder for someone to attack you if anything they could potentially use against you is already out in the open) but some of it must just be pure lucky because almost everyone I know who has a mental health condition has experienced much worse stigma. I know people who have been turned down at interview or hounded out of jobs, people who rejected by friends and family, people verbally abused within their communities, people who have had their fitness as parents questioned – all because they had a mental health diagnosis.

How baffling it was, then, to read Elizabeth Day’s Observer article “Robin Williams and the talk of the ‘stigma’ of mental illness” over the weekend. It is Day’s contention that the concept of stigma has been massively oversold in discussion of the death of Robin Williams. “Is there a stigma?” she asks. “The very fact that the internet was abuzz with people sharing their own stories of depression and encouraging others to do the same suggests that, thankfully, we live in a more accepting age. Most of us will know of close friends or family members who have dealt with depression. Some of us, myself included, will have experienced a form of it ourselves…. As a result, I don’t view mental illness as a scary, strange thing or as a form of weakness. Do you? I doubt it.”

Well, here’s one thing, Elizabeth: if you’re bringing up your own mental health but you don’t specify what your experience has been, I can draw two conclusions from this: either your experiences were quite mild, not necessitating a diagnosis or specialist treatment (I suspect this is the case, since further down the article you conflate depression with mental health in general, as if the experience of people with depression is the same as the experience of people with schizoaffective disorder or dissociative identity disorder, in which case you’ve fallen into the age old trap of thinking that because you are “on the spectrum” this gives you insight into the whole thing, just as did Giles Fraser last year). Or you do have a diagnosis, but you’re scared of sharing it in a national newspaper. And that would be – well, the effect of stigma, you see.

I do have a diagnosis and I am willing to talk about it. And although it’s a severe mental health problem, my diagnosis – bipolar mood disorder – is viewed relatively positively by the public. And yet. And yet stigma is a thing, you see. It is very much a thing. How do I know this? Well, despite my celebrity-friendly diagnosis and my relentless determination not to be ashamed of who I am, I have had so very many experiences where I felt marked, felt branded as worthy of less kindness, less respect, less understanding, where I was made to feel one of “them”.

Hooray for you Elizabeth Day if you have never experienced serious mental illness or stigma. But to assume that everyone else, all these people sharing their concerns on social media, must just be wrong because it’s not been your personal experience – that’s like me as a white British woman stating that racism doesn’t actually exist, just because I’ve very rarely experienced it.

 

If there were no stigma…

…in the 1990s, I would not have felt that sick, hot shame and horror at having a classmate spit at me, “YOU have got some kind of personality disorder.” If there were no stigma a decade later, I would not have so felt marked out by reluctant to share the diagnosis of borderline personality traits I held for many years. Depression, that was one thing. Anxiety, well, I could tell people about that. But disclose that a consultant psychiatrist thought I had something wrong with my personality? No thanks.

…my university GP would not have looked me in the eye and said solemnly, “Are you sure you want to see a psychiatrist? I think you should, but you must know this means a… psychiatric file will be opened up on you.”

…I would have got cards and flowers when I left my last job because I was poorly. No one, not even the team members I directly managed, was ever told that I had been diagnosed with bipolar, nor even that I would not be coming back. I was simply disappeared.

…I would never tense up when hearing of a brutal murder, as I wait for the inevitable opinion on social media and in the comments sections (ahead, of course. of any detail) that the perpetrator must be “psychotic” or a “psycho”.

…I wouldn’t have felt sick with shame and anxiety about having to disclose my past history to a complete stranger to attempt to get health insurance or life insurance, would not have been horrified to have to recount much needed treatment in an open plan office.

…I wouldn’t think twice about applying for an ESTA visa to visit the United States.

…it wouldn’t feel like an issue to answer the question, “Oh dear, have you got a headache?” with, “Oh, no, actually I just need to take my antipsychotics.” I do it, because that’s what I do, I challenge by being quite matter of fact about my life. But I am aware of having to make the conversation matter of fact, having to plaster on a smile and count on being met with a kind response.

…I wouldn’t feel like I was crossing an invisible line of acceptability once I start talking about my persecutory delusions. No matter how safe the space, no matter how committed I am to sharing my story, I have to screw my courage to the sticking place to do this. Every time I do it, I worry about people finally realising I am much more mental than they ever thought, that the respect they had for me will diminish, that I will no longer be able to exercise authority.

…I would never see reputable newspapers misuse the word “psychotic” to mean intensely angry or lacking in empathy. I would never see them use the word “schizophrenic” to describe a schism in the government or the economy. I would never have to cringe at hearing the weather or somebody’s fickleness being described as “so bipolar”. There would be no need for guidance from Time to Change or the Samaritans about how to report mental health issues appropriately (guidelines that were widely ignored in the reporting of Williams’ death).

…I wouldn’t have cringed in my tube seat recently upon hearing a discussion about a man who was such “a nightmare” because he was “a manic depressive”.

…I wouldn’t have to hesitate over every job application before I tick the box marked “disabled” and note my diagnosis. My first meeting with every new line manager would not inevitably involve having to have “the talk”.

…I wouldn’t hate having to ask for my prescribed drugs by name in the pharmacy in case I am overheard.

…I wouldn’t have been written off as ineligible for jury service a few years ago, despite informing the Ministry of Justice that my job at the time was to write reports to advise Crown Court Judges on sentencing (the law has thankfully been changed on this point, but it took a lot of campaigning from the big mental health charities).

…it would feel just as normal to walk into a community mental health clinic or mental health inpatient unit as it does to walk into a GP surgery or an acute hospital outpatient department. It really, really doesn’t. 

…I wouldn’t feel like I have to preempt judgment about why my children don’t live with me full time to prevent assumptions that I have had them taken away by social services.

…I wouldn’t have to read newspaper articles that deny my community’s experience because our voice is considered trustworthy on our own lives.

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On seeking help

At twelve, I had a problem. Something was wrong with me. Something had descended upon me, out of the blue summer sky. In an instant I felt dreadful, weighed down, sick with something I couldn’t identify, that I felt in my body yet somehow knew to be of my mind. After a few days of carrying that weight around, I needed information. Instead of spending break with my friends I went up to the school library and selected a book on teenage health. I pulled out a few others, too, and spread them around; I didn’t want anyone to see what I was looking at. The book had a chapter on the mind with a checklist for something called “depression”. I ran my finger down the page, checking off symptoms. Yes. Yes, yes!

At the bottom of the page there was a statement I found very comforting. I don’t remember the exact wording, but it went something like this: depression is a real illness. It is not your fault and it is treatable. Speak to your parents or a doctor to get help. On reading it I felt weak with relief. It was real! The thing I didn’t have a name for, the thing I couldn’t describe was real and there was help available!

I took that book very much at its word. Perhaps as a result, where the topic of help for mental illness is concerned, I am a slow learner.

The first person I asked for help was my mum. “You’re depressed?” she said. “You father’s depressed. Everyone’s depressed!” She sounded overwhelmed, frustrated. I was shocked to hear that my father had depression. I’d no idea, and now that I knew my own problems seemed of little significance. I vowed to say no more about it, only I kept on having periods where I was depressed (I didn’t see my “funny” or “giddy” spells as a problem for many years to come) and it showed.

The next person I asked was a GP. I was told that at 13 – by which point I was already considering suicide – that it was normal for teens to be moody, but that I should see a counsellor. I didn’t like the way she always asked me how things “made me feel”. She didn’t listen when I tried to tell her that it wasn’t as simple as that, that sometimes everything would be awful but I would feel great for no reason, and vice versa. I saw another GP at 15, and was told it was all about my menstrual cycle, which didn’t seem right either. At 17 I saw a third GP, who prescribed beta-blockers and left me to it.

At 19, at university, I finally found a practice nurse and GP who listened. I described my experiences and they gently suggested that I might have manic depression and should see a psychiatrist. I was hugely relieved that someone was taking me seriously and I would finally get to see a specialist, someone who could really help me. I knew many people would be horrified or ashamed to be told they should see a psychiatrist, but I saw it positively. I wanted help, you see.

The psychiatrist sneered at me. He accused me of lying about my symptoms, of dropping red herrings into the conversation to mislead him. He insinuated that I drank too much (I was teetotal). He said that he didn’t think my fiancée was an acceptable partner for me. He stated that he “did not believe” in diagnoses. In order to flush out my lies about having “up” periods, he sent me off with a box of fluoxetine to see if I would go “as high as a kite”. I did, and yet he still refused to believe me. He twisted my words until I hardly understood the conversation any more and was almost screaming with frustration.

The experience was a profound shock. Discovering that the help available was worse than no help left me feeling more hopeless and despairing than ever. With the assistance of my course tutor I complained and was assigned a different psychiatrist, but by then I had lost trust in the system. Those two awful appointments were all it took. The new guy was nicer, and he did give me a diagnosis – bipolar, the new name for manic depression – but he offered only one course of action, a prescription for lithium. There was no conversation about what my diagnosis might mean for my life. There was no discussion of any other treatment options. Things weren’t as bad as with the first consultant, but I still wasn’t sure this help was actually…helpful. Scared of the litany of risks associated with lithium and wary by now of psychiatrists in general, I nodded and smiled then walked out of the door and never returned.

Next there was the emergency duty psychiatrist who told me she couldn’t admit me when actively suicidal, as I was the wrong type of person for her ward.

After that, there was the counsellor who was horrified by my manic antics, and showed it.

There was the Health Visitor who dismissed my high score on the Edinburgh Postnatal Depression Scale as being a result of my being “very self-aware”.

The parenting helpline volunteer who listened to my account of severe postnatal depression, a newborn with colic and a toddler with behavioural problems, and responded, “What did you think it would be like? Little House on the Prairie?”

There was the medical ward nurse who jeered at me as I cried in my hospital bed following an overdose.

The week after that overdose a Community Psychiatric Nurse came to my home. She asked me what I wanted and tutted when I didn’t know (how could I? I’d never met a CPN before). She said that I needed to understand hers was a service for people with serious mental health problems, so she wouldn’t be coming again.

There was the consultant psychiatrist who never once looked up from my notes and never once tried to progress things further than GP prescribing.

A clinical psychologist took me very seriously and made a recommendation I should receive therapy, but the team met and removed me from the waiting list without telling me.

There was the consultant psychiatrist who seemed nice and friendly but who changed my diagnosis without telling me, so I had to learn it from a copy of the letter from my GP.

There was the emergency duty registrar who kept answering her iPhone while I tried to explain my suicidal mixed mood and got my story all muddled.

Most recently, there has been the disappointment of the service offered by my Home Treatment Team, including another diagnosis-fiddler of a consultant and series of ever-changing nurses.

On every occasion I have engaged open-heartedly. Optimistically even, despite the fact that I am generally a glass-half-empty person. It seems that no matter what my experience is, I still cling to that belief that mental illnesses are real illnesses, that they are not my fault, and there is help out there. Every disappointment brings fresh hurt.

Why am I telling you this? Because today another celebrity with a mental illness (bipolar, no less) is reported as having taken his own life. In the surge of responses, people suffering from depression or having suicidal thoughts are urged to talk to someone. I’ve seen tweets going to so far as to offer assurance that someone will listen. As someone who’s frequently been suicidal, and as a Mental Health First Aid instructor, I would most certainly endorse the talk to someone message. But we need to be very careful about managing people’s expectations that help is available. I am one of the fortunate ones. I have a diagnosis. That diagnosis is considered serious enough that I have access to secondary care specialist psychiatric services. The vast majority of people who experience mental distress receive none of this interest from services, yet it still took me until I was 37 years of age to get help that actually…helped.

Yes, people can phone helplines. Yes, they can chat to peers online. But what then? What then for the person who doesn’t fit services’ criteria? What then for the person living in area where the appropriate service has been cut? What then for the person whose GP doesn’t believe them and won’t make a referral? What then for the person who waits months to see a psychologist or a psychiatrist and finds that they are unhelpful or oppressive, or their suggestions trite? These things happen to people every day.

I want people in distress or despair to talk. But who will be listening?

 

 

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