purplepersuasion | Mental health blog by a service user with bipolar disorder.
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.”
So next week I have to go to the GP to ask for an extension to my sick note. After initially signing me off for six weeks they gave me another certificate for four weeks, but this time I have to have a face to face before they will extend it. This means that it’s been ten weeks since my disastrous attempt at working, and in that interval I have been under the Crisis Team, hospitalised, under the Crisis Team again and am undertaking a medication change. I hope that’s enough to persuade the doctor to officially sign me off for at least another four weeks, but if it isn’t, I’ve been thinking about how I can possibly explain to him why I cannot do a job.
The thing is, I already have a job. It’s called “Having a Severe Mental Illness”. It’s not a catchy job title, and it’s not glamorous, but there it is. I wasn’t interviewed for this job but now I’m in it, no one will let me resign.
This job is pretty much a zero-hour contract. I have to be available for its demands 24/7, 52 weeks of the year. I do not know when I will be called up for “duty” as an actively sick person, but when I am, I have no choice but to go into the office. While I’m at the office, I won’t be able to do anything else but work. I could be at work for a few hours, or every day for a couple of months. This makes it very hard to plan any alternative career. Really, I would love to get a proper job, but last time I tried my old work came calling after a few days, pissed off that I had tried to seek alternative employment. I would love even more to be able to do some study, a higher degree maybe, but would work let me, even if I did it part time and flexibly?
Zero hour contracts don’t make for a good social life. I can never fully enjoy myself for fear that work will get in the way. I am scared to have houseguests – what’s the point in them coming if I can’t spend time with them because I am called in? Is it worth getting expensive concert tickets, knowing that on the night of the gig I might have to be in the office? Booking a holiday is a particular gamble. I might try and schedule time off but this is always a fragile arrangement and on numerous holidays the call has come and I’ve had to clock in.
I am exceptionally lucky that my husband has a stable income which allows me to even contemplate these things. My financial reward for being constantly on call is Personal Independence Payment (PIP) and Employment and Support Allowance (ESA), but I don’t just automatically get paid for showing up at the coal face; I have to prove over and over again that I am forced to do the job. You could resign, people tell me, if only you dd the right thing. Do more yoga. Eat the right foods. Stop taking the zombie meds they are feeding you. Whatever there is out there, I have tried it (except the Ancient Art of Molten Russian Healing Metals Performed in a Cave in Australia, which was once proposed to me, probably my own fault I can’t get out of this contract now for not taking the person up on that one).
So here I am. Blocked from career progression. I have been in the job since school days, it stopped me doing that higher degree when I was a young graduate and may stop me again now. Any chance at fun is overshadowed by the fact that I might never get to see the band, take the flight, eat the lunch. The job has taken many precious hours away from my time with my children. I am constantly at its beck and call. And every month I have to prove that it exists.
During my first admission, I was bored. Really bored. Most of the time I sat around talking to other patients. In the absence of communal seating areas not dominated by a blaring TV, we sat on the floor in the corridor. We talked about anything and nothing, watching the micro dramas that played out as ward colleagues vented their frustrations at being refused a smoke or a pair of earbuds, at finding that their phone had not been on charge after all, at being asked to provide a urine sample. I quickly learned that the only way of alleviating the boredom for even a short time was to participate in any and all activities on offer, no matter how much I might usually scorn them.
I went to music group and experimented with percussion instruments I had never seen before. I went to craft sessions, which was like primary school except we weren’t allowed scissors. On Mondays I went to a gentle cardio class, and on Fridays I went to yoga. Once I was allowed to go to another ward for Tai Chi. I swallowed my hatred of the term and went to “recovery group” (I say group, no one else turned up). When it ran, I went to “healthy snacks” which had somehow, much to everyone’s delight, morphed into decorating cookies and making milkshakes. I did try to go to creative writing but it only happened once. All of these activities were organised by the tireless Activities Coordinator because the ward was “between” Occupational Therapists.
I didn’t know much about OT as a profession before I first went to hospital. Occupation in this sense has nothing to do with paid work, but with occupying time in a purposeful, meaningful way. According to the Royal College of Occupational Therapists, OT “provides practical support to empower people to facilitate recovery and overcome barriers preventing them from doing the activities (or occupations) that matter to them. This support increases people’s independence and satisfaction in all aspects of life.”
I appreciated that there was an effort to give us some purpose, but still I was bored. I did not feel that there was enough happening to occupy us to the degree that we would be helped to recover. Mostly there was only one activity for perhaps an hour a day, although if we were super lucky there might be two; sometimes, especially’ at the weekends, there was nothing. In my view, in order to be “occupationally theraped” we needed structure and purpose of something each morning and something each afternoon. For two weeks out of the five that I was there we had almost no activities because the Coordinator was on leave. I moaned about it to Tom and at the ward forum meeting attended by the Consultant and Ward Manager.
When I was in my next unit, I felt vindicated because there I found the structure I was looking for. During my couple of weeks as an inpatient I took part in more, and more imaginative, activities:
Singing group (twice a week)
Time at the gym (which was actually pretty decent)
Music appreciation group
Breakfast group (where we cooked bacon and eggs for ourselves)
“Giant” games (Jenga, Connect 4, etc)
I was still bored a lot of the time, but overall I felt both more occupied and more “theraped”. I went out of my way at ward forum meeting to let the OT and his assistant know how much I appreciated the range of the activities. He seemed really gratified.
When I was admitted to my current unit a week and a half ago one of the few things I was cogent enough to ask was, “What sort of activities do you have here?” “Oh, all sorts!” said the nurse checking me in. “Anything you like.” I was really pleased to hear this; I didn’t know how long I’d be in, and I knew how important it was to my recovery from a crisis to have that structure and purpose. The next day, there was no announcement or sign about activities, so I asked a nurse and was told that an OT would let patients know what was happening.
It was a short and easy message to convey. What was happening was: next to nothing. There was an OT room which was not always staffed, and I made sure that I got in there as soon as it was open. I met the OT and her assistant, and asked what there was to do. I was invited to contribute to a mosaic started by prior patients, although the OT explained apologetically that they didn’t have many mosaic tiles any more, so I might want to do some grouting (um, not really) or use some beads. It was hard to get the beads to stick in the adhesive; mosaic tiles are specially designed to adhere. I just about managed to use some alphabet beads to spell out “Quirky is cool”, which was the only vaguely meaningful thing I could think to make out of the letters I had.
I asked what else there was to do, and there were a lot of art materials, but everything was self-directed. There was no organising expertise or suggested theme to motivate the user. I grabbed some brightly coloured strips of Plasticine thinking to model some animals, but despite trying to moisten it, it was too old and too prone to cracking to be useable. I drifted away.
I did appreciate that the OTs were doing rehabilitative activities with individual patients, helping people shower, cook, etc, acquire or reacquire important living skills. They did assessments at people’s homes to see how those skills would be used in practice. A friend of mine could not wear her shoes because her feet were too swollen, and the OT assistant kindly went to her house to find her slippers for her. They were doing good work, but all with individuals.
So what did the rest of us do? Those that could, read – one good thing about the ward was the range of books. There was a surprising amount of classic Russian literature. I can’t help wondering who left that behind when they were discharged. Some people watched telly, but mostly it talked to itself, it was too difficult to find something that everybody wanted to watch. I did watch Love Island a few times, because that won the most number of votes.
In general, people were talking to each other. Yes, that’s a good thing, but it was very inconsequential because people’s stays were short and meaningful relationships were hard to achieve. The activity most commonly engaged in to alleviate the dullness was smoking. Two patients told me that they had been non-smokers when they were admitted but had taken up smoking because of the boredom. I’m pretty sure this isn’t the kind of physical health outcome the Health Board are looking for.
Without meaningful activity designed to produce a therapeutic environment, what is the purpose of a ward? It becomes nothing but a warehouse, a place to contain people until they are no longer a risk to themselves or others. That’s it. Beds instead of shelves, but otherwise just a storage facility. By day three of my admission I was desperate to leave. Not because it was nasty, the staff were lovely, with very few exceptions the patients were nice to be around, there was a lovely garden (for smoking, of course). The food was bad, but it wasn’t dire, and you got a choice. But it was so boring. I didn’t want to be warehoused. I wanted to be occupied at a time when I found it hard to occupy myself until the danger had fully passed.
I know now that when I was complaining on the first unit, I had no idea that I was actually lucky. Since tweeting about the total lack of structure on my last ward, quite a few people have come back to me along the lines of, “Sounds like the ward I was on.” This is a widespread problem. I’m going to write to the Health Board expressing my concerns that any ward should be used as a warehouse and giving my perspective on what it is like to be in a non-therapeutic ward environment. I announced this plan to my Community Psychiatric Nurse, who I think was slightly amused, but I’m very serious about sharing my views. We’re vulnerable people, we’re not boxes, and we deserve better.
I remember the first time I was in hospital I was sitting on the floor chatting with my friend Phil, when he spotted somebody he remembered from a previous admission. “There’s Paul!” he said, looking really pleased to see him. “Great guy. Lives with his mum. Voice hearer. Whenever the voices start telling him to kill his mum, his CPN (Community Psychiatric Nurse) gets him in here for a few days, they have a little look at his meds, three days later, job done and he’s home.”
I felt sad for Paul. It didn’t seem like much of a life, an existence punctuated by admissions, although I admired his relationship with his CPN and his ability to spot when things were getting risky.
Today, as I was discharged from hospital for the fourth time in two and a half years, I reflected that I was becoming something like Paul. I have to accept now that when I get into a mixed mood state with intrusive, “loud”, relentless thoughts of ending my life, hospital is the best way to make it all stop and give me my head back. A week ago I couldn’t rest, couldn’t enjoy myself, couldn’t focus on anything other than how to run away from Tom and take my life. Now I feel completely normal.
I tried to manage things in the community. I was brave, and confessed to the overdose plan. Tom took charge of my medication boxes. I was brave, and confessed that I had extra boxes he had forgotten about. Then, as I always do, I kicked myself for giving up my means to my end. My CPN was involved in the decision to have Tom hide my meds, but told me that she would be on annual leave the following week.
An overdose now less possible, my whirring brain went on to the next thing. Having thought so much in the past about the train tracks, my mind went there next, especially as around last week I had been, ironically, very triggered by this Samaritans video on preventing railway suicide. I rang my CPN on the last working day before she went away and told her that things were “rough and rocky” (those were the words I believe I used). I don’t think I told her the half of what was in my head, but she was concerned enough to refer me to the Crisis Team.
The Crisis Team were a pleasant surprise. When we moved to Wales we were pretty much told that there was no home treatment as such, and that if I got into a real crisis situation I would have to go to A&E. Yet there they were, within hours of the referral, travelling in pairs and ready to visit twice a day if needed. I wasn’t 100% honest with them at first. My mind had moved on again. I lived in London when I had these kinds of plans before, but now we are in the country where the trains are slow and infrequent and it would have been easy for Tom or the crisis team to call the police and track me down. So my next plan was to take a very circuitous rail route to a big city and do the job there. I spent a lot of time thinking about how I could keep changing up my route to evade the police.
By this point I was also into the practicalities. Tom and I went for a lovely country walk but in the back of my mind I was thinking about how to leave him my bank and life insurance details, the contents of the notes I would leave for my children, my social media passwords so that he could notify my family and friends. I couldn’t focus on anything. Being with those thoughts was like standing behind a waterfall; the noise of them drowned everything else out, yet I remained curiously emotionally untouched.
If it wasn’t upsetting, though, it was tiring. Boy, was it tiring. The constant plotting and planning and evaluating was absolutely exhausting and in the end it was the exhaustion that drove me to full disclosure. The Crisis Team and I had been having the “Do you think you should be in hospital?” conversation for a couple of days, but on Sunday morning I had come to a point of such utter weariness that I decided that if they offered me admission, I would say yes. I would even tell them the full extent of my planning. I loaded up a couple of books onto my Kindle and charged my wireless headphones. Just in case.
Once everyone knew exactly what I was thinking, things moved very fast. One Crisis Team nurse called ahead to the ward, who said that they didn’t have a bed for me but would accommodate me in a visitors room until someone else was discharged. I packed as quickly as I could, desperately trying to remember my own advice in this BBC video. Everything felt very unreal. We got in the car and set off, following the Crisis Team to the hospital, and I was suddenly very anxious that I might be doing the wrong thing.
When we arrived, I was convinced that I had made a mistake and told everyone that I had changed my mind. Tom and the staff tried to convince me to at least stay one night; it was implied that now I was there, I would not be allowed to go again. “The Crisis Team are as worried about you as I’ve seen them in a long time,” said the nurse in charge. I cried and cried because it seemed there was no going back. When I saw that there was no actual bed in the visitors room, just a mattress on the floor, I cried harder.
But do you know what? It fixed me. Like all three of my previous admissions, being in hospital took the obsessive thoughts of absconding and/or killing myself and chucked them out of the window. Once in an environment where I can’t carry out my plans, they wither and die. Yes, tragically, people can and do take their own lives while in hospital, but it is much, much harder and only certain methods push my obsessive buttons. Again, I could try to abscond, but if being picked up the police was one of my main concerns, that wouldn’t be the smartest of moves.
On Monday, I felt so much better. I could think again, breathe again. I got my own room. On Tuesday I cried a lot, which I take to be a massive release of pent up tension. On Wednesday (yesterday) I was a tiny bit hypomanic, and woke up desperate to go for a run in the garden. This too, I have learned, is my usual pattern. By the afternoon I felt like… me. Again. I felt so well that the boredom of the ward really began to chafe. I have been on the three mental health units now, and without a doubt this one had the very least to offer in terms of ward activities. Two people told me that they had gone in non-smokers and taken up smoking just to counteract the boredom. I’m pretty sure that’s not the health outcomes the NHS is looking for. I began agitating for discharge and it was agreed that if I went out with Tom yesterday and felt OK, I could go home today.
I did feel OK. I felt supremely normal. “I feel,” I said to Tom, “that I have come back to myself.” He kissed me. I had come back to him too.
Tom, the ward psychiatrist and my favourite Crisis Team nurse were at my discharge meeting today and we discussed what it was about admission that had been beneficial. As a group, we drew the conclusion that in crisis, short admissions are, for me, the way to go. That perhaps I should even be asking for a hospital bed earlier, once I know things have become really risky. I never would have thought of myself as a person needing multiple admissions, but here I am, four under my belt, and all four did the job. Maybe I am Paul, and maybe Paul is an OK person to be,
I feel ambivalent about using the term “triggered” regarding my mental health. It comes from the language around Post Traumatic Stress Disorder (PTSD) and refers to being tripped into a flashback, intrusive thoughts or feelings of distress by some external cause. Some people sneer at the proliferation of trigger warnings, but knowing that a book, film or even a tweet contains content relating to trauma-inducing events might spare someone a real ordeal. I don’t want to diminish the experience of people with a PTSD diagnosis by co-opting their language. So I am hesitant.
Equally I don’t want to dilute the definition of trauma. Yet the fact remains: I have been traumatised by my own bipolar. Just as some people experience acute or prolonged physical pain as traumatic, the emotional pain I have been through is something I can never forget, never let go of, never “get over”. Sometimes I think I can – and then…
Then I hear something, or see something and I am triggered.
Yesterday evening I watched The Bridge with Tom. We’re big fans of Scandi drama and we’ve watched every previous season of the show, so I was looking forward to it. Only when I heard the theme music (Hollow Talk, by Choir of Young Believers) suddenly I was not in the living room. It came out of nowhere, but all at once I was in my old living room, when Tom and I still in our London flat, and I wanted to die. I was in a place of extreme pain, a place from which I was trying to escape, just for an hour, by watching a TV show. I knew that before the show started I had been in the kitchen, doubled over the counter, then curled up on the floor, trying to deal with the howling maw of psychological pain in my heart. I knew that I craved the relief of sleep, but that at the same time I would dread bedtime once the programme had finished. I felt it all as if the intervening 18 months had never happened. The feelings were the same. It was real.
Perhaps it is impossible to live through the level of pain I experienced and not be forever changed. I have spoken to other people who similarly feel traumatised by mental health crises they have lived through, who believe that their episodes generated genuine trauma. But how do you deal with trauma not caused by the actions of others, not the result of an aeroplane crash, not the aftermath of a conflict zone, just one part of your brain at war with another? Who can you blame?
The feelings were too much for me. I had pushed those experiences to the back of my mind but now I know I won’t, can’t live through that again. I went to bed vowing that I would never allow myself to experience that level of pain in the future. And the only way I could see of preventing that was to take my own life; quit while I was ahead, before things deteriorated.
I am aware that this is all in the context of some recent mood instability. When my Community Psychiatric Nurse came to visit a few days ago, she was concerned because I’d been a bit hypomanic. When she left she reminded me of how to get help out of hours, should I go into crisis. I told her some weeks ago that if I thought I was getting ill, that would be a risky time for me, because I would not be able to bear going through yet another loop, yet I felt disconnected from those words this week because I was a little high. And now my thoughts feel unconnected to either pole of mood. It simply feels like a question of simple, clear-headed logic.
Today I feel a little better, but not much. That taste of the horror that was my previous life remains in my mouth. I feel on the cusp of serious planning, of doing something irrevocable which could well result in much more intervention by services, maybe hospital. On paper, I have everything to live for. But that’s the point, that’s what I can’t bear to lose. If I’m going to lose it, I’d rather do it on my own terms.
I started out by really, really wanting to like this book. I adored Ellen Forney’s graphic memoir, Marbles: Mania, Depression, Michelangelo and Me, which came out a whole six years ago. So I was excited when a friend told me that Forney had a new book out called Rock Steady: Brilliant Advice From My Bipolar Life.
But I also kind of didn’t expect to like it, because generally I’m not keen on advice guides. They tend to be just too prescriptive, and the American ones I’ve read in particular seem to be very heavy on the “take your meds, keep to a routine” approach with little room for nuance.
I tried to keep an open mind.
The book is rendered in a combination of text (hand lettered, there is no standard print until you come to the resources section at the end) and cartoons, with some illustrated characters or features recurring throughout. Forney draws herself much as she does in Marbles, for example when showing herself interacting with her doctor, but as much of the advice is directed at any person with a mood disorder, people are usually represented as generic, well, person shaped figures (or occasionally a teddy bear). There are lots of tiny, quirky comments in the margins, some of which made me laugh out loud.
The main thrust of the book is that if you are stable, you might well relapse in the future, but you can improve your odds of staying well through self-management. Forney distils the basics of her programme for staying well into the self-consciously clunky “SMEDMERTS” – sleep, meds, eat, doctor, mindfulness, exercise, routine, tools, support system. Uh oh, I thought, mindfulness. Uh-oh, I thought, routine. Here we go.
Only every time I expected Rock Steady to become rigid or prescriptive, it – didn’t. There’s a healthy pragmatism throughout. Sure, it’s better to stay off devices late in the evening if you want to get a good night’s sleep. But the book doesn’t preach; if setting them aside “isn’t an option”, it suggests you might want to adjust the colour palette on your phone or find an a pair of blue-blocking glasses. I also liked that the book isn’t prudish – it suggests that giving yourself an orgasm is a perfectly nice, acceptable way to help you to get off to sleep. I’ve never seen that in a self-management book before.
OK, we all know that drinking alcohol when you’re on meds is not a great idea, but I do it, and lots of other people do too. Rather than just tell you that alcohol is BAD, Forney focusses on whether a person’s drinking is problematic in its own right, rather than yelling at you. There’s a healthy separation throughout between the ideal and the possible. It’s all about finding solutions that work for you. Can’t do a 15 minute mindfulness mediation like Forney does each morning? Well, guess what, she hasn’t always been able to either, and sometimes a walk in the forest can be just as nourishing.
In Forney’s world, it’s OK not to know what you want. It’s OK to feel multiple things at the same time. “Once when I was really low, I was conflicted… I really wanted a stuffed animal, but I was already struggling with feeling like a big baby. Then I had an idea for a stand-in: big soft fuzzy pillow.” It’s OK to have a complex blend of feelings about meds, and the book is careful not to assume that meds will always be a part of someone’s treatment package.
One thing I found particularly useful was the metaphor of “red flag poles” (things that could be triggers for an episode and that you need to watch yourself around) and “red flags” (warning signs that are running up the flagpole and may suggest you’re becoming unwell). I’ve already used this with my Community Psychiatric Nurse, because I’ve had a few red flagpoles recently, including losing my job and mega sleep disruption caused by a nasty cough. And just in the past few days there have been red flags. Feeling full of energy despite lack of sleep. Me, a notorious hater of housework, wanting to clean from the minute I wake up. The need to dance. Huge irritability. The CPN suggests I use the model when completing my crisis plan because it clearly makes a lot more sense to me than the format on the plan itself.
There’s a lot of “been there”, hands-on wisdom. How to swallow your meds easily. How to cut pills. Techniques for better sleep (and even this hardened insomniac is planning to give some a go). A massive range of helpful phrases to keep telling yourself to help you to hang on. A lot of the practical advice doesn’t really apply to a UK audience, though, as it involves choosing a psychiatrist and/or therapist, finding a hospital that will take your insurance, etc (although the way the NHS is going, perhaps we will all one day need this advice).
Should you buy this book? Obviously it will be of more benefit to those recently diagnosed with a disorder on the bipolar spectrum (the books does take care to mention major depression and dysthymia, but it’s really most useful for those with ups as well as downs) but even this old hand found some practical tips and some general inspiration for cleaning up my act a little bit in terms of looking after myself.
Put it this way: a young relative of mine has recently been diagnosed with bipolar. Rock Steady doesn’t come out until 29th May, and today is the 24th. I’ve already pre-ordered him a copy.
Once again, social media is full of exhortations to talk about it, to talk about depression and suicide and mental health in general, with the core message being: reach out. Because even if you don’t feel like it, somebody out there cares. It’s brought to my mind a very dark period of my life when my children were tiny, and how I sought help again and again, only to be continually rebuffed. Many mothers with serious mental health problems worry that their children might be taken away from them; I needn’t have had any concerns, as agencies didn’t seem to care enough about us to notice the impact of my appallingly poor mental health on my kids. 17 years on and I get much better care, but you can bet that there are parents all over the country living through a nightmare of postnatal illness and being told that they’re OK.
Anyway. Here we go. Three vignettes of seeking help.
As promised, the Community Psychiatric Nurse came to my door. I had no idea what to expect as I’d never met one before. I really wasn’t sure what her role was. I was hoping she’d have some sort of plan, a package of support she could offer that might just help me carry on, but she opened with a question. “So, what is you want from me, Charlotte?”
I was nonplussed. How was I supposed answer, when I didn’t yet know what she could do? “I don’t know,” I said. “I just…so I just came out of hospital because I took an overdose, and I’m trying to deal with that, I suppose.”
“I don’t know,” I repeated. “I’m not sure where I go from here.”
The nurse looked annoyed and gave a kind of chuckle of irritation. “Look, Charlotte, this is a service for people with serious mental health conditions.”
I flinched, probably visibly so. It had never occurred to me that taking a big overdose when I have very small children might not qualify as “having a serious mental health condition”. But clearly it didn’t, because the nurse was already standing up and putting on her jacket. “I don’t think there’s anything we can really do for you,” she was saying, “so I’ll feed that back to the team. If you need anything else, it’s back to your GP, OK?”
I nodded, and showed her to the door. I had felt like I was drowning in my feelings, but now I felt completely numb. Was that an improvement?
We tried yet another drug, sertraline this time, and Dr Fiore sent the Health Visitor round. I knew I had met Pat a couple of times when Alice was very tiny, but I didn’t feel as if I knew her at all. I made her a coffee and we sat and talk about normal things – how the children were growing, what a lovely sized living room I had – until she asked about my situation.
I decided to be honest. “I can’t cope,” I admitted, shrugging slightly. “That’s the bottom line. I can’t cope and I was stupid to think I’d ever be able to, with my mental health history. I should never have had kids.” Pat was already looking slightly shocked, but I persisted. Since I’d already started divulging all these awful, unsayable things I may as well carry on until I’d aired them all. “This is not how I wanted my life to be. I am a terrible mother.”
“Oh, you’re not!” Pat exclaimed reflexively, reaching over to touch my knee. “You’re a lovely mum!” I cringed, feeling I’d been told to keep my emotional messiness to myself. “I think, though,” she continued, rummaging in her bag, “we’d better just do this Edinburgh Postnatal Depression Scale, is that OK? I’ll just pop today’s date on the top… You can use my pen, look. Have you got something you can lean on?” I reached for Max’s dinosaur encyclopaedia, which was always handy.
As you are pregnant, the form stated, or have recently had a baby, we would like to know how you are feeling. Ha! Thank God somebody did. I was instructed to read through each question and consider how I’d been feeling over the past seven days. I looked down the list. Had I been able to laugh and “see the funny side of things?” Well, but I wasn’t really sure what funny side was to being trapped in a house with two completely dependent children I was incapable of looking after. Had things been getting on top of me? I sighed and tick the box marked, “Most of the time I haven’t been able to cope at all.” Yes, I’d had difficulty sleeping. Yes, I was miserable and crying most of the time. Jesus. What a fucking pain I must be to live with. I paused at the last question, then decide to tell the truth: the thought of harming myself had, again, occurred to me “quite often.”
Alice stirred, grizzled. I handed Pat the form and put the baby to the breast while she reviewed my answers. “Hmm,” she frowned, rechecking the score, “you’ve come out very high. But I think that’s just because you’re so self-aware.” She put the lid back on her pen, satisfied. Oh. That was all right then. I’d be OK being suicidal as long as I knew I’m suicidal.
One day I flicked through the Yellow Pages, looking for support of any kind. The drugs were ineffective, Pat was hopeless and I was desperate, so I decided I’d call a parenting helpline. They would have heard it all before, surely? Maybe they could give me something to go on, some nugget of wisdom that would keep us all OK, get us through this afternoon? I occupied Max with yet another cartoon, feeling shitty about the TV as babysitter thing, and waited until Alice was asleep. I sat on the rug with the directory open beside me. The phone was weighty in my lap and it was a struggle to make myself lift the receiver and dial, a further struggle not to slam it quickly down again when a woman’s voice answered. She wanted to know why I was calling, so out it all spilled: the toddler who screamed all day and the baby who cried all evening, the sense of being trapped in my own house by the chill of winter and the unreliable public transport. How I mostly lacked the energy to go out anyway, and when I did I had to endure the humiliating supermarket tantrums and the frosty mums at the toddler groups. How desperate I was.
“Parenting is hard!” asserted the call handler, tutting. “You sound just like my daughter. I said to her, what did you think parenthood would be like? Little House on the Prairie?”
I pressed my finger down to end the call. No one. There was no one.
[Image shows an outstretched hand. Copyright Emanuele Longo via Flickr https://www.flickr.com/photos/em4nu/)
Recently I decided that I was ready to get a job. Aside from the freelance stuff I did a couple of years ago, I haven’t worked for a long time. The last time I worked for an employer was in 2011, when I left following a spectacular relapse and was never able to go back, so there was a lot of agonising involved in my decision. What if I found it so stressful that I lost my recent, fledgling stability? What if I loved it so much I soared, then crashed and burned? (This has been a pattern in my work history.) To make things even more complicated, for dull reasons it had been made clear to me that if I ended my claim for Employment and Support Allowance, I was not entitled to anything further. We can get by on Tom’s money but losing an independent income would be a big deal to me.
I looked around. What could I do, with such a big CV gap? Having moved to a rural area job opportunities were thin on the ground, particularly for someone who can’t drive. I settled on looking for admin posts, and a couple of weeks ago I unexpectedly found myself accepting a job as a receptionist at my local GP surgery. The “local” bit was problematic. I was told I would have to change GP practices and register with another nearby. Two were accessible by bus: in the first, one of the GPs at the first is my next door neighbour, and the second is out of catchment for my new Community Mental Health Team (CMHT) and would mean a change of Community Psychiatric Nurse (CPN), something I really wasn’t keen on as she and I have only just met and I feel we get on well.
Despite all this, I was willing to give it a go. More than that, I was excited! I was pleased and proud to announce my start date on social media. I mentally projected into the role, imagining myself helping people and being indispensable to the doctors.I bought work clothes in anticipation of wages I had not yet earned. In particular, I bought two pairs of comfy shoes, knowing that I would be on my feel at the front desk most of the day, and tops in the “uniform” colours.
I lasted just four and a half days before today, by mutual agreement, I left.
From day two onwards I had woken up with dread in the pit of my stomach and needed diazepam to get me in a fit state to go to work. I had endless conversations with Tom about it being very very early days, and needing time to settle into it, but I quite quickly began to fear that I had made a horrible mistake.
Today I made it in OK, but by mid morning I was trying not to cry in front of patients, which would have been the ultimate humiliation. I went, with a sickening sense of déjà vu, to cry in the ladies’ loo. When I tried to splash water on my red eyes I found that the cold tap was stuck and wouldn’t turn. It would be obvious that I’d been crying, so I preempted any questions by almost literally grabbing the senior receptionist and telling her that I did not think I could do the job. She took me back into the ladies as there was no other private space and took stock of the state of me. There was no way I was going to be going back onto that desk, so she told me to go upstairs to the staffroom and wait for my manager. It was intended to be supportive but I felt like I had been summoned to see the headmistress.
I had expected the job to be stressful. I had thought about all the complexities of juggling patients, sluggish IT systems, and constantly ringing phones. But it was the things I hadn’t thought of that were unmanageable. Part of my obsessional anxiety is about getting into trouble; another component is about causing harm to other people. I sometimes find it very hard to cook for others because I fear that I will poison them, and Tom has had to endure many a rubbery chicken dish because I let my anxiety overrule the stated cooking time. Recently I cooked for a group of mainly elderly people and almost didn’t give them anything because I was so frightened that they would die as a result of eating my lentil salad. I had to talk myself down from simply throwing it away, and because I fed it to them anyway I lay awake in the night, awash with waves of unbearable anxiety. I even ruminate about harm I could had caused, but didn’t; the time I held a baby after a glass of wine and could’ve dropped her, that time I left the bedroom window open by mistake and my young daughter could’ve fallen out. We are talking 12 or 15 years ago here. I frequently fear being found out and even sent to prison for past or current misdemeanours.
Now I don’t know why I didn’t think of this, but there are so many important mistakes you can make as a GP receptionist. You can book the wrong appointment for the right patient, or book an appointment for the wrong patient entirely. Your actions can mean that they miss a critical blood test or that their elevated blood pressure goes unnoticed. You can give someone the wrong test results, causing them needless worry or generating false reassurance. You can forget to send a message to a doctor asking for a phone call to be made to advise a patient on what to do next. Any of these could result in harm coming to somebody. This fear of risking the health of the population of largely elderly patients built and built in me to the point where I was anxious about every single action I took. And this morning I did make a mistake.
Is there any way I could’ve been better supported to cope with the job? Well, yes. I never had my induction last week as my manager was – through no fault of her own – absent. And the team was so short staffed that I was pitched into the middle of things with no real training, the approach being to have me deal with phone and face to face enquiries, booking appointments, etc as best I could and ask for help when I got stuck. In other words, get into it and get on with it. Important general questions I wanted to ask just never got answered as there never seemed to be time for anyone to sit down with me and explain how certain things worked. Maybe I should’ve been more assertive, but whenever I asked I was told that I would get an induction next (this) week.
But this week is too late for me. When my manager came to the staff room I explained why I wasn’t coping and she suggested the job wasn’t right for me. I told her that my primary goal was to stay out of hospital and that I felt like the job was making me sick, and she felt that in that case the job really wasn’t worth it and that I should go home and “draw a line under it”. I’m not 100% sure whether I quit or whether I was gently let go. Maybe a bit of both, but I can’t do the job either way so it doesn’t really matter I suppose.
I’m feeling pretty raw. It’s hard not to feel like a failure as an adult when you can’t even do five days at a job before you lose it (in both senses of the term). I feel like I gambled massively and I lost. I just rang the DWP and now I have to reclaim ESA with no guarantee of getting it back. Like I say, we’ll survive, but it’s a big chunk out of our joint income. Now I get to stay with the same GP practice, but I have the humiliation of going in and knowing everybody as a now ex staff member. At least there will be no question now of having my CPN replaced with a stranger.
What I do now, I have no idea. Maybe do a little volunteering. Hide away. Lick my wounds. I suppose that if I do ever get to a point in the future where I feel like I can work again, there is some learning to be had from this, but really if you ask for support and the support isn’t there, what can you do? Disability was flagged up at interview and I still ended up in this pickle.
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