Charlotte Walker’s Purple Persuasion is a mental health blog by a writer who has been dealing with bipolar disorder for more than 25 years. She writes, “While I want this blog to have a wide reach in order to connect with other people in similar situations, it remains my space for exploring what it is like to have a serious mental illness.”
I grew up very close to a Victorian asylum. It began to close in the late 1980s, when I was in my teens, but even as a child I was aware that some of the people I saw wandering the village had been done a gross disservice by psychiatry. Many were elderly, having been admitted decades before, often for spurious reasons and with little hope of living in the community again. Recently I saw some accounts of life in that hospital. You will be unsurprised to learn that an unwarranted number of the wards were locked, and patients hugely overmedicated.
The first time I saw a psychiatrist was just a few years later. I was 19 years old. I had been referred by my GP, who was concerned about my depression, but I had been reading abnormal psychology textbooks in the university library and was beginning to suspect that I might have bipolar. I can’t begin to say how unhelpful and upsetting I found my encounters with that consultant. He was sexist, and obsessed with achievement and status. He was dismissive. He called me a liar. He implied that I drank too much. His brief but efficient gaslighting was such that after an hour’s assessment I barely knew what was true about myself. My mum came to the second appointment because I could not face going back alone. He told her I was like a silly schoolgirl and sent me off with a prescription for fluoxetine (Prozac) which he said would send me “as high as a kite” if my “red herrings” about elevated mood were true. I stuck with the antidepressant through two weeks of sleeplessness, agitation, despair and suicidal ideation, all the while thinking that I was far worse off than if I’d never asked for help.
In my recent treatment I have seen some awful things. It is (or should be) harrowing to see somebody sedated through an intramuscular injection they have not consented to, or subjected to any form of restraint. I once saw a man taken to seclusion by a phalanx of eight or nine staff. The patient was doubled over inside a sort of cage of nurses, the nurse leading holding his head down so that he could not see where he was being taken. I’m sure there were serious risk issues involved because this response was very swift, but it was nonetheless shocking. I have seen people so sedated that they could not talk, could barely move, could do little except drool. I have seen people on antipsychotics gain multiple stones of weight with no support for managing this. I have seen people detained without understanding why, moved from shorter s2 (of the Mental Health Act) detentions onto longer s3s without understanding why. I have seen many, many people given one drug or another without ever knowing the reasoning behind prescribing, let alone having actively participated in the decision-making or meaningfully consented to the side effects.
I have met (online and in real life) people who have been saddled with diagnoses they did not ask for, words which have made them the subject of others’ fear and misunderstanding. Labels that have led to professionals writing them off as hopeless cases or branding them as manipulative, that have reduced their employability, that have made them doubt their own experiences.
Well, now it looks like I’m talking myself round to thinking that a system that employs so much coercion and is arranged so hierarchically must be outright unacceptable. It’s easy to understand why there are so many people who feel themselves to have been abused and degraded by some of the things done to them in the name of medicine. Let me be very clear on this: I hear them. I think that psychiatrists should damn well hear them. I believe that their suffering must never be downplayed, and that doctors must accept that their intention to manage risk and alleviate suffering is not experienced as such by many patients.
Probably some of the psychiatrists I know online or in person are a bit disappointed in me by this point. Well, I can only tell it as I see it. But wait, there’s more. I just can’t go around saying that psychiatry is awful, because then I’d be denying the very real help it has given me, particularly in recent years. This may be entirely due to the fact that the psychiatrists who have cared for me (and I do believe they have truly cared) since my relapse in 2011 have been good people – although that’s still not uncomplicated. The same Home Treatment Team consultant who has helped through endless crises was at one point painfully paternalistic, thinking up a new diagnosis and sticking it in my notes without telling me. The same ward consultant who worked with me to find a better drug regime prescribed for some of those patients given meds that they did not understand.
But many, many aspects of their input have been beneficial. My current diagnosis, formulated with my input, has been particularly helpful. A psychologist opined on Twitter recently that psychiatric diagnoses were “meaningless”, by which I think they meant that there was no scientific evidence base for them. Meaningless? Not to me, they’re not. My diagnosis is the context within in which I understand my life. Strange behaviours and inability to honour commitments, often the cause of much guilt further down the line, make sense in terms of bipolar mood cycles. Without thinking of myself as bipolar, I had assumed I was just a terrible person. Without thinking of myself as bipolar, I cannot see the same behaviours coming and try to take action to curb them. Online I have found my “tribe” of other people whose experiences and behaviours I recognise, a kind of kinship established by a shared label/context. I have seen the same kind of connections made among people with, among others, diagnoses of depression, anxiety, obsessive compulsive disorder, and yes, borderline personality disorder. A lot of people find labels oppressive; for some people labels can be liberating. Liberation is not is meaningless.
The drugs… the drugs help. At least some of the drugs, some of the time. I have taken a large number of medications, some of which were never helpful at all. Some were a little helpful but came with such horrendous side effects that on balance I decided to stop them. Right now I have a better quality of life than I have in a couple of years thanks to a combination of two mood stabilisers, an antipsychotic and a little kick for my thyroid function. Yes, I take a lot of pills, no, that doesn’t really bother me if it allows me to just about manage. In fact there are lots of people out there who also feel that their quality of life has been enhanced by psychiatric medication, with many stating that their drugs actually keep them alive. This is clearly an aspect of psychiatry that many people value to some degree . I’ve also seen “good news stories” in an inpatient setting, the use of antipsychotics turning around the lives of young women whose psychosis had placed them in very real danger from physical accidents or sexual exploitation. They were sent on their way in a week or so without labels, with a (hopefully) one-off psychotic episode resolved.
Personal relationships help. I have been with the same community consultant for six years and he has been consistently patient and supportive and warm. He continues to be optimistic (in my view, wildly so) that my functioning can be improved and is open to trying different drugs and seeing how that aspect of treatment can mesh with insights gained in psychological therapies. I didn’t have a care coordinator for five of those six years, and he essentially provided that function although it wasn’t his job.
So we know that psychiatry can do and has done things that patients perceive as harmful, and it’s OK to fear or hate a medical specialism if you feel that it has treated you badly. It’s important to note that finding psychiatry personally helpful does not cancel out the bad experiences of others. But it’s also OK for a person to feel positively about psychiatry, or at least about the aspects of it that have helped. It’s OK to feel positively about the psychiatrists they work with, if the interactions are sensitive and empowering.
It’s not OK to shout down some people’s good experiences on the grounds of other people’s bad ones. It’s not OK to take away words that gives people a sense of meaning and a framework for understanding their own lives because the same words are not helpful for other people. Overall I am (mostly) positively disposed towards psychiatry, and despite what some people on Twitter may say I cannot be wrong on this, because I cannot be wrong about my own experiences. Denying the validity of people’s lives and self knowledge is at the core of oppressive practice, but this cuts both ways. You don’t get to pick which type of experience is “correct” and simply brush aside anyone who find their diagnosis, or their psych meds, or their psychiatrist helpful because it challenges the idea that psychiatry is and must always be inherently brutal.
I totally get that it’s hard for some people to understand why I might be broadly positive about psychiatry, but tweets about good relationships with doctors, “life-saving” medications and enlightening diagnoses show I’m hardly the only one. Rather than rejecting that, shouldn’t those who raise their voices against terrible care be celebrating the fact that care can sometimes be good? Some people find psychiatry helpful. And that’s OK.
Nothing. I do nothing. I can count on the fingers of one hand the number of days I’ve worked in the past 18 months.
When I was well, I had a career with professional training, and was promoted every two years.
During the first few years of this episode, I was able to build a portfolio career of sorts, a patchwork of service user led activities including research, patient participation, freelance writing, public speaking, training and other bits and pieces. All of it drew on my lived experience. It was interesting and vibrant. I did some media work, sometimes on behalf of the big charities, sometimes just invited to speak or write because that was what I did.
In the past year and a half, I have been really ill. Now work is no longer and option, I can’t focus enough, I’m not reliable enough. I did write one unpaid essay for publication recently. Despite being descriptions of some of my own life experiences it was like pulling teeth and had it required being more analytical or logical it would have been totally undoable.
A couple of weeks ago I wrote to Mental Health First Aid England and formally resigned as an instructor. I can’t deliver any courses, let alone enough to keep my registration up, and I can’t make the professional development events.
I’m also just about to resign from the Coalition for Collaborative Care, an NHS England supported patient involvement organisation I’ve been part of since day one – actually before day one, from the event at which it was first proposed. Again, there’s little point in retaining membership of its Co-production Group. I can’t get to any of the group’s meetings, and if I can’t get to the meetings I can’t represent the Group at other meetings with partner organisations, at conferences, in service development. I can’t even blog for the Group’s website.
All the emails I still get from both organisations only serve to make me feel awful about myself. I see other people doing interesting, sometimes extraordinary, things and I can’t contribute. It’s like another world; I’m trapped inside a fishbowl, a world I can’t touch moving around me.
I feel really bitter about this.
When people asked me what I did for a living I used to say, “I’m a mental health consultant”, because really a lot of my work was a kind of consultancy and it was easier than trying to explain all the different things I did. Now I don’t get asked very often, because I rarely go anywhere to meet new people, but when I do I just say, “I’m not working at the moment.” What people make of this, I don’t know. Maybe they mentally label me as a “housewife”. Maybe they assume I am at home full time with children. Maybe they think I’m actor between jobs. What’s the cliche, that when actors are out of work they refer to themselves as “resting”? Well, I guess that’s what I am actually doing. Enforced resting. Recovering, supposedly, but those who follow me on Twitter will probably know that I’m really not a big fan of the recovery model.
So nothing, actually, I do nothing. I miss having a purpose. Having only recently come out of hospital for a third time in 15 months I can’t see a return to form happening in my medium term future.
Yes, I’m totally aware that this is a boring, whiny post that doesn’t address any big or entertaining questions, but sometimes I just need that. I can barely blog at all now; every now and then I’ll get a flash of inspiration, but mostly – nothing, and I feel diminished by it. Thanks for reading, if you got this far!
Image shows a slightly mournful-looking goldfish in a bowl by Carrie Little via Flickr
In past times when I have been very ill a bed has been found at my local unit – and quickly. I think one was sourced within the day the first time around, and the following day at the start of my second admission.
Today marks day five of waiting for a bed. During this period only one other bed has come come up within my Trust, and that was over an hour away by car and two hours by train. I was worried about feeling lonely, but with hindsight I wish I’d just taken it. The only other beds on offer have been ECRs (basically, private hospital beds paid for by the NHS to take patients on a temporary basis) which haven’t been guaranteed and have been further away than that.
Yesterday there were no beds in my Trust at all. Not one. I looked at the Wikipedia page for each borough my Trust serves and came up with a population of about about 1.5 million people under the Trust’s remit (I suppose this isn’t that surprising given that like a number of London Trusts, it covers some areas out of the capital and let’s face it, there are 8.6 million Londoners to start with).
Anyway. There you have it. This is the bed crisis in real terms.
Every day Home Treatment Team push for a bed for me on my usual unit. Every day they are so sweetly apologetic about the fact that no, there still isn’t one, even though we all know it’s hardly their fault. Every day we talk about what to do.
I met the consultant today. Essentially my options are:
Carry on in the community with Tom watching me 24/7 as I become increasingly distressed and exhausted in the ongoing hope of a local bed
Ask for an ECR bed with the risk that I could be moved back to any Trust inpatient unit when one opens up – both could be far away
Choose to take up any other bed that opens up within the Trust, wherever it is, and stick it out
Choose to take up any other bed in the Trust with the agreement that I come back to my usual unit as soon as there is a bed.
None of the options feel good. I don’t know what I want.
And unfortunately not knowing what I want, or think, or feel, is the whole problem. In the grip of mixed mood again I fluctuate from mildly hypomanic to sharply low within the day. I shift from thinking that I am fine, that I don’t need to be in hospital, that Tom should just go back to work, to sobbing that I am totally overwhelmed and can’t manage in the community a moment longer.
In the moment, I mean it. I believe it. I believe that I am fixed, that in fact there was probably nothing ever wrong with me, that I am a fraud, even. I announce happily that I have never felt less like killing myslef in my life, then get irritated when others are sceptical, when they gently point out that just that morning I was saying I couldn’t shake the thought of buying lots of pills on the internet, for the specific purpose of an OD. And wasn’t I just saying that it was not viable for me to be in the community, wasn’t I just crying out, literally, for a bed?
Conversely, in great distress, I feel I can never be happy again. It’s this that’s behind the pills thing. I am not prepared, no, cannot do, another round of bipolar depression. I have explained this. If the only way to avoid it is to take myself out of the equation, so be it. Unless Tom will take me to a euthanasia clinic that deals with mental health issues, and I think we have clearly established that he will not.
I cannot trust myself. I don’t know if what I feel at any given moment is true or right or reasonable. It churns and churns away, and the bed issue is contributing hugely to the rumination. What should I do? How far away can I cope with going? What if it’s awful? Whatever I never get to come back to my own unit? I have never felt so confused. I described it to my dad earlier as being a mental washing machine; a pink sock rises to the top, but with the next spin a green one takes its place.
My biggest fear is that I take a bed and end up somewhere awful. Previous admissions have taught me that informal admission is very Hotel California – when you arrive you sign a piece of paper stating that you can check out any time you like. Then just try to leave. How can I make this decision, when I don’t even understand what or how I think at the moment? Maybe I need somebody to make it for me, but apparently nobody can.
Tom and HTT suggest taking it a day at a time. The goal is to distract, distract, distract, so I am colouring in, taking loads of baths, doing a complicated jigsaw puzzle. Blogging. If things get markedly worse, then a private bed might be the only option. Or by an immense stroke of luck, a local bed may come up. Maybe there is someone waiting to go home as I wait to go in. Maybe.
Dullness warning: I am going to assume you’re at risk of boredom here, not just because I have already posted twice in a week, but also because this is going to one of those posts that’s using writing as therapy in attempt to work through some stuff.
Trigger warning: I will be talking a lot about suicidal thinking.
One thing about having been a blogger for a long time is that I can look back at old posts and see what has changed over time. But I can also look back and see that in a way nothing has changed, that I just go through loops. I’ve blogged in the past more than once about a situation very similar to the one I find myself in, but I need to get it all out again, so no need to read on if you’ve heard all this before.
I am at war with myself. I have at least three separate thought processes going one. One is just me, normal me, but another is obsessed with suicide planning. I can run the primary script without it being noticeable to anyone that the obsessional one is going on in the background. I can talk about the future, whilst planning to make sure I don’t have one. I do at times feel pretty low, but in no way am I sitting around feeling that my life/pain is intolerable and therefore I need to take myself out of the equation. In fact, the planning part of me feels eerily calm. It tells me that making an attempt is just something I have to do, have to get over with, like I must do my tax return before the deadline.
The third script is slightly psychotic one. In the past week I have had a couple of really terrifying moments where I realised that “They” had started messing with me again (it’s too complicated to explain the whole “being persecuted by extra-dimensional beings” thing here, so if you are a newer reader or would like you memory refreshed, you can read an account here). I have had the frightening feeling that They have implanted the thoughts of suicide into my head because they want me to kill myself. I have become aware of things that always frighten me when I am clinically paranoid: banana skins, twins, weird tech glitches, being alone of the top deck of a bus. This has extended towards being scared to even see an empty top deck on a different bus, and to worrying when the post comes about what seem like messages on the outside of the envelopes. Always, my Them sense is tingly, although thankfully it is not as bad as it has been in the past. I have also experienced periods of mental confusion, which has happened in the past when I have had what my consultant calls “psychotic-type” experiences.
I had been doing so well! Not well enough to work, and unwell enough to have to be careful with myself at all times, but nothing like this since about September last year. I can only attribute my current situation to stress. Some time ago Tom and I decided to relocate so that we could enjoy his retirement away from the hubbub of London. Unexpectedly, the perfect house popped up in a perfect location in Wales, and we decided to go for it. In the space of two months we have seen viewed the house, had an offer accepted, got our pace ready for the market, and accepted an offer. It’s been so swift because we hadn’t expected to find somewhere to move to so soon, so our flat wasn’t even in a fit state to be sold. I couldn’t even begin to guess how many hours we have put in cleaning, painting, wallpapering, sorting possessions, packing them up, driving to the dump, putting things in storage. It’s been a very pressured time. Mid May is my deadline for an attempt because that when contracts are due to be exchanged and it feels quite sensible not to create more legal mess by doing it after that point.
The intensity of the suicidal thoughts ebbs and flows, but I have found myself doing more and more researching, and giving more and more consideration to which part of previous plans might be useful. So the normal part of me is beginning to consider myself at risk. I know that things are not as far gone as when I wrote this post back in November 2014 (November 2014? I have been going through this same shit for two and a half years?!) but it’s the same pattern. I’m trying to nip it in the bud but it’s so, so hard. It’s so, so hard to open with Tom about it, but I probably more successful than in the past. As you imagine, part of me doesn’t want to hurt him, and the sneaky part of me’s not keen keen to share because it might/will shut down my options.
Yesterday while Tom was sleeping I found myself crying and crying because I don’t feel that I will ever get to live in that beautiful house in Wales. The normal bit of me was pointing out hat I could avoid that disappointment simply by not killing myself, but more and more I feel that it’s out of my hands, that I have to go along with the plan.
I’m concerned enough that I have have my Trust’s triage number in my phone, because that’s how you access Home Treatment Team these days, self-referral. Part of me longs for the HTT, to be back under that close monitoring so I don’t have to do all the monitoring myself, and yet I remember how at times I railed against it, how fed up I got with going back to them time after time. My Care Coordinator is ringing on Tuesday, but it’s a Sunday as I write this and I don’t think I can wait that long, so I’ll be calling tomorrow.
Image shows three odd shoes and is course of in pastel via Flickr
The Primrose project: severe mental illness and physical health
The McPin Foundation are recruiting to a new lived experience dissemination advisory group (LEDAP).
The Primrose study, coordinated by McPin and University College London, has been looking at physical health among people with severe mental health problems and now the team need help with dissemination of their research findings. We are looking for about 10 interested mental health service users or carers to work together to tell people about the study and what it found. There are details about the study on the McPin website, as well as some specific information about the LEDAP group and how to apply.
Members of the LEDAP will be paid for their time, and reimbursed for travel.
Interested? Please follow the instructions on the information page.
So this week Prince Harry made a number of statements on mental health. I am really glad that he feels able to disclose a need for treatment around the death of his mother. It would be very sad to think of him going on and on in his adult life without being supported through grief which must have been incredibly complex, given the awful circumstances of that loss. He can only have had a very tough time facing such an immense loss at such a young age under the scrutiny of the press and the public. But things got a bit murky when he used that as a jumping off point for speaking about mental health in general. (I’m not going to go into the lack of a level playing field between those with immense material resources and of the rest of us, you can read my earlier thoughts on privilege and mental health here.)
Kensington Palace summed it up on Twitter like this:
“Mental fitness relates to every single one of us, together we can smash the stigma.” “Everyone struggles, we are not robots.” (All one tweet, I’ve preserved the punctuation).
I keep hearing this lately – especially I think from psychologists, and especially I think from the academic variety. The idea that “we all struggle”. We all have “troubles”. We all have “difficulties” and we all experience “distress”. Let’s not use diagnostic language, because that increases stigma. Let’s not use words like “condition” or “disorder” or “illness” because that creates a them and us, the unlabelled and the labelled, again fuelling stigma. Let’s focus on the commonalities between us all. Where’s the harm in that?
I can’t believe that I have to point out the harm, but clearly I do.
You should see the state of my face. Out of the blue, it’s covered with open pores. I don’t know what the cause is. I’ve found a very few references on patient forums about lurasidone causing skin and hair to become more greasy, but not enough to call it a side effect. Whatever the cause, I hate it. On the one hand I feel like a spotty teenager, yet it simultaneously makes me feel old. My skin is not what it was.
So I have problem skin. It’s a skin problem. I’m actually really unhappy about it and have wasted money on products that almost certainly don’t work. I’ve bent friends’ ears about how I have lost control of my skin and it’s affecting my self image. I know that’s pathetic, but it all feeds into my ongoing self-hatred and body issues, OK? I know I’m not alone, though. A great many people have skin problems because, fairly obviously, we all have skin.
Only some people have malignant melanoma. Some people are stared at all day, every day because they have facial scarring. Some people experience potentially life-threatening rashes all over their body.
I have skin problems.
They have skin problems.
Our skin problems are not the same.
I don’t need medical treatment. Nobody’s videoing me on their phone because they think I’m such a freak. Those nasty craters are probably not lifelong and they will not, if left unaddressed, kill me quickly or slowly. To say “we all have skin problems” does not instil solidarity; it grossly downplays the level of impact on those with severe conditions. It minimises the risk, it minimises the implications and it minimises the suffering.
People at the really tough end of things almost certainly know what it’s like to have pimples, or the brown spots that come with ageing, or ragged cuticles. Yet I will probably never know how it feels to be at the severe end of the skin problem spectrum, and I would never pretend to. It’s not a two way street.
So let’s go back to mental health.
Yes, “we all have struggles/troubles/demons/distress” but just like with skin, some struggles are more overwhelming. A good number of mental health difficulties are transient, and many are mild. Some, such as bereavement, are part of the normal course of life – the pain is very real, but it is not necessarily pathological. Some people end up having time off work because their stress levels have built up to the point where they cannot carry on effectively, but often the situation can be resolved by changes in the workplace. Some people get very anxious about things they know don’t merit it but they are able to push on through and live their lives.
Yet some people don’t have custody of their children due to their mental health problems. Some lose close personal relationships or are never able to form them. Some people bankrupt themselves when unwell. Some people are never able to work. Some are detained against their will. Some people have permanent physical effects from self injury, malnutrition, suicide attempts. Some people live in terror because of unfounded fears that people are trying to catch and kill them. Some people are mentally or actively working on ways to kill themselves. Many people do die.
The vast majority of people will never know how it feels to live through that, and I am sincerely glad for them. But most people with severe mental health problems will know what it is like to experiences loss, to experience stress, to be overly anxious. They know the everyday struggles, the common struggles we all have to live through, and they know that they’re not the same.
Please do not tell me we all have troubles. Please do not tell me that the personal relationships I have lost, the overdoses I have taken, the end of two professional careers, the inability to parent my children full time, my endless cocktails of drugs with their endless parade of side effects, my hospitalisations, my community suicide watches are just a normal part of life. Please don’t. Not when I cry in front of Facebook looking at my normal friends having a normal life of little things I cannot have. That’s insulting and painful.
The idea that we’re all just on some grand human continuum doesn’t bridge a gap, it increases it. Being “all the same” feeds into the belief that those of us with severe mental illness are no different to those with the mild, transient kind – so then when we describe the severity of our troubles, what, are we just being divas? Oh you have bipolar? But everyone has their ups and downs, just some people can’t cope with it. Oh, you’ve been diagnosed with Borderline Personality Disorder? We can all feel a but moody at times, you just have to get a grip. We all feel we need to go on a diet in the summer. We all feel low now and then. We all have minds that play tricks on us. Of course we do.
And so builds in an expectation that severe mental illness should be easy to fix because it’s not all that different to any other period of distress, really. “Well, with the support of Occupational Health and my line manager, I was back at work in five weeks.” “I had four sessions of CBT and was able to put my anxiety into perspective.” Were you? Were you? Good. I’m glad you have been able to put your troubles behind you and get on with life without 30 years of unsuccessful treatment. But that certainly feels like luxury from here.
Comparing open pores and malignant melanoma would, and should, be considered ridiculous and actually rather distasteful. So why should it be considered valid and meaningful to bundle up severe suffering and life-altering consequences with day to day “struggles”? Failure to identify the often excruciating experience of serious and entrenched mental health problems is a whitewash.
Please don’t try to normalise severe suffering. It’s not just a part of life in general, it is a extraordinary experience that dominates many people’s lives and identities. I am like everyone else in so many ways – needs, desires, hopes, skin – but when I am ill I am more unlike the general population than I am like and I am acutely aware of that. Can we please stop pretending otherwise for the purpose of dismantling the medical model? Because you’re marginalising the voices of the people you purport to want to help.
Image: A mass of unidentifiable flamingos
(Source: Flickr, status: commercial use and modifications allowed, creator: Madhav Pai)
It’s no fun being trapped in a pit. You were walking along in the forest and you just kind of… slid. And now you’re on your own in the darkness, looking up at the moon through a circle of dirt.
You didn’t ask to get in. You can’t see any means of getting out. Nobody knows you’re in the pit. You will have to go on bearing it alone.
But then (oh, miracle!) somebody walks by. They lean over the edge of the pit. “Hey!” they call down, “hey, are you OK? You don’t look OK.”
Suddenly you’re embarrassed to have fallen into a pit – what sort of a ridiculous person would do that? – so you shout back, “Yeah, I’m OK! Thanks for asking!” and the person goes on their way.
You have that exchange a number of times but a sense of resentment grows. Why do these people get to walk about the forest without falling in a pit? Why are you ashamed of being in one? You didn’t dig the pit yourself.
One day a jogger in a charity vest stops by. “Hey!” they shout. “Are you all right? Because if you’re not, it’s OK to talk about it, you know!”
You hear this message a lot over the next few days. A man with a dog tells you to “reach out”. You assume he means verbally, because if your arms were long enough to haul yourself out of there you’d certainly have done so by now. A kid on a scooter tells you to find someone to talk to. A group of women inform you that they have supported each other through some dark times and that you could be supported too if only you shared your problems with somebody else.
So you make a monumental effort to transcend the shame and the fear and the apathy and the anxiety, and next time someone passes you yell up to them that you don’t think you are all right, that this pit is an awful place to be and you could use a little support. The person backs away from the edge. “Wow,” he says. “Wow that’s terrible. But I don’t think I’m the best person to talk to. I mean, I don’t know anything about this stuff.”
You keep on asking for help.
You are advised that you could make the darkness less awful if you lit a couple of candles, which might be good if you had any. You are advised that notwithstanding the length of your arms you could probably could climb out if you really tried. You are advised that you should be grateful because some people’s pits are worse than yours. Some of them have wooden spikes.
Wait, other people are in pits? Oh yeah, sure! About one in four of them. All over the forest. Are they all talking about it? Some of them aren’t, not yet, but we’ll keep on encouraging them.
The charity jogger swings by. “Don’t give up!” they urge. “It’s good to get it off your chest! Keep talking.”
One day something amazing happens. A well-dressed woman at the top of the pit actually seems to listen. “This is terrible,” she says. “I’m so, so sorry. I’ve been trained in listening to people who have fallen into pits and I’m going to get you some help.” Help! Someone will come with the right equipment and haul you up out of your hole. For the first time in ages you have a little hope.
The first person in the Rescue Team doesn’t look much look very hands-on; he’s in a suit, no hi vis in sight. It’s his job to do an assessment of your predicament, so he asks you a lot of questions about where you were going and what you were doing when you slid, and whether you have ever fallen into a pit before, and whether there is any family history of falling into pits.
It seems like he is really listening.
At the end of the conversation he explains that although he can see that you are in a pit, your pit is not so very deep compared to other people’s and that money for Pit Rescue is very tight. He will recommend that you should be given a very short ladder, but unfortunately the waiting list for even the shortest ladder is about three months. Three months! They want you to stay in a pit for three more months?
Unbelievably, a prince and a princess show up. She’s beautifully dressed and they’re both smiling. They lean down over the lip of the pit and remind you that when you talk about pits, conversations about pits in general get just a little bit easier for everyone. You think to yourself that maybe if everyone just didn’t live in palaces there might be more resources to go around for Pit Rescue, but obviously you don’t say anything.
Things take a turn for the worse. As winter approaches, the pit begins to fill, slowly but surely, with water. Now you starting yelling out at anyone and everyone that you think you are going to drown, demanding help. People start walk away, looking embarrassed because you seem hysterical, maybe even a little aggressive. But you’re supposed to keep on talking, right?
The Rescue Assessor turns up again. “OK,” he says, “so it looks like things have taken a turn for the worse. I’m going to make sure that a Rescue Support Worker brings a snorkel. It won’t stop the water going over over your nose and mouth, but it might just keep you breathing. Let’s hope it doesn’t come to that.”
Now you’re not yelling, but screaming. As the water brushes you bottom lip you start telling anyone and everyone that things are becoming unmanageable, that you fear that you will die in the pit, because that’s what you’re suppose to do, isn’t it, keep talking? The Rescue Support Worker makes a face. “I don’t think the risk is all that imminent.”
Just as you have to use the snorkel, the Rescue Assessor makes a site visit. “Oh, all right,” he says. “If you really, really can’t manage, even with equipment, we’ll divert some resources to haul you out of the pit. What you’ll need after that is a warm bed and dry clothes at a Rescue Centre.”
This sounds like heaven. You haven’t been warm in what, weeks, months?
“Only,” he goes on, “we don’t have one at our disposal. A lot of them got shut down – budgetary constraints, you know. The closest set of dry clothes we can find for you is in the next kingdom.”
You don’t want to travel to the next kingdom. You want to stay in your own forest with nice dry clothes, you just don’t want to be in a pit. You tell them that although you appreciate that this is a form of help, it is not the kind you wanted.
“Well, I’m not sure you have a choice. We think the risk is too great now. You say you don’t want to be in a pit, but how do we know you’re not going to fling yourself down the next one as soon as our backs are turned? We’re going to put you in the carriage anyway. We don’t have the time or money to watch everyone in the forest, you know.”
Your throat hurts where you have talked and yelled and screamed for help. But only the trees are listening.
I’m not sure what I am writing here, or why am writing here, other than because I feel awful. I just need to let it out, I suppose. In an ideal world I would have an on-going relationship with a therapist, but of course I don’t. So this is one of those posts that is simply me venting. Boring, right? Feel free not to read on.
I suppose the problem is that my life is boring – whilst at the same time, being way too exciting. What I often try to get across to others is that unpredictability is the very core of my disablement. I feel awful today, but tomorrow I could be all too great, stupidly great, recklessly great. Or I could feel worse. My fleeting suicidal thoughts could gain traction. I have no way of knowing. It’s boring because to minimise the chances of it being too exciting, I essentially have to do nothing of note.
We have essential renovations going on. There is packing, there are boxes. Familiar things are being put into storage. There are workmen. Tom and I are sanding and painting and cleaning up the mess. I want it all to be done – we need it all to be done – and I went into it knowing that it would be somewhat stressful, but I have been surprised at how wobbly it’s made me. I am disappointed by this. Like I have been trying to be a functional adult and fallen at the first major hurdle.
We have a short holiday coming up, which ought to be a lovely break from the house stuff. Yet instead of being excited, I am highly anxious. We’re not going anywhere long haul, we’re not going for many days, I’ll have Tom with me all the time, it’s somewhere I’ve been to before. But it’s not just a voyage abroad, it’s a voyage into the unknown in terms of my mental health. I have had some awful, awful times away, and some fantastic ones. I have zero idea how this one will go. I’ve made an appointment with my GP for the day before we go in order to ask for a small amount of diazepam (like many GPs, she’s not going to give me any more than that) in case it all goes badly. I can’t tell you how much I resent having to do this as part of my holiday prep.
With all this going on, it’s probably a really bad time to test out whether I am ready for work, but when you are self-employed you have to take opportunities when they come along; no one else is going to phase a return for you. I am so, so sick of testing out whether I am OK to return to work and being smacked round the face with a big slippery NO, but I really wanted to try again.
I had the chance to go to an event last week, kind of a project relaunch that was billed as a party. It seemed like a great time to try and get back involved, and a chance to reconnect with lovely colleagues who I hadn’t seen in 14 months. Plus – party! I assumed there would be cake. I was really looking forward to it, but then for the couple of preceding days I couldn’t stop crying. It became very clear that I did not have what was needed to get myself into London and be out all day, let alone connect with tens of people and take in a lot of information. It was the right decision not to go, but I felt bitter.
Yesterday I congratulated myself because I did manage to go into central London (it was a journey I had done many times, and I went outside rush hour) to see about perhaps joining a project at somewhere I have often worked. The idea was to slip in on this initiative, initially on a voluntary basis, to see whether I could work there as a freelancer under the Permitted Work rules (I’ve already been given permission to do this). The meeting lasted just an hour and half. At the end I was very tired and my brain was foggy, but overall I felt positive. For some reason the tube bothered me more on the way back, and I felt a bit panicky, but I made it home.
First I fell asleep on the sofa then I kind of generally fell apart. I felt increasingly negative about the holiday, which was frustrating for Tom, who’s planned it for us, and I think we both felt misunderstood. I went to bed on my own, feeling low. I woke up during the night even more times than usual (lurasidone still gives me insomnia) and lay awake with suicidal feelings, my mind returning to consideration of the old methods. I am so disappointed by that. I haven’t “been there” for a good six months or more.
Why can’t I just do stuff? Stuff that normal people take for granted – just the stuff of adulthood? Why do I keep falling at hurdle after hurdle, even the little ones? I’m not expecting any answers, and I know that so many people reading this wonder exactly the same thing every day. I am far from alone.
Yes, this is how it is. This is my life. But it doesn’t mean I have to like it.
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