Not an illness? A response to the British Psychological Society report, ‘Understanding Depression,’ October 2020

Trigger warning: suicide and self-harm

It’s early March 2020, a few weeks before lockdown. I’m standing on a bridge over the M25. I climbed out of a window to get here. My husband is taking our daughter to school. He’s locked me in the house and taken my car keys, knowing I’m not safe to be left, but nothing is going to get in the way of my plan to jump off that bridge.

Or, it’s May 2019. I’m in my psychiatrist’s office, my wrists bandaged. The voices in my head are telling me I need to die. I *need* to die. The doctor has left the room to organise a Mental Health Act assessment. I’m trying to escape the room, but my husband is physically blocking the door. We’ve been told that if I do manage to get away, the police will be called.

Or, it’s April 2017. I’m in a psychiatric hospital. I’ve just been detained under section 5(2) of the Mental Health Act for trying to get them to discharge me. I’m curled up on the floor of my bedroom, shaking from head to toe. I can’t do this any more: this is simply more than any human being can be expected to endure.

Or, it’s January 1995. I’m not quite 16. I’ve just seen a psychiatrist for the first time. I’ve been referred because I’m suicidal, or, as the doctor writes in my report, ‘at risk of self-destructive behaviour.’ I’ve already tried to kill myself once, but I didn’t take enough tablets and I’m still here – but I don’t want to be. Even though I have a loving family, a boyfriend (who’ll later become my husband), good friends and am on course to get straight As in my GCSEs.

My life, almost since I can remember, has been plagued by recurrent episodes of paralysing depression. I’ve tried to end my life more times than I can remember, and my body is covered in scars. I’ve been in ambulances, in intensive care, and sectioned in a psych hospital. I’ve been a missing person with the local police force searching for me.

But according to the British Psychological Society (BPS), I’m not ill: I have what they describe in their new report, Understanding Depression, as ‘a common human experience.’

I’m no ‘snowflake,’ and I’m not easily triggered, but reading the report has left me with stinging eyes and pounding heart, and a sick feeling in my stomach. How can a supposedly respected authority on mental illness have reduced my lifelong journey with depression as, in their words, something we experience ‘just as we experience anxiety, anger, or even love and joy?’

I’ve known those experiences; we all have. I’ve felt sick with anxiety before taking exams, and full of fury when I’m hormonal and the house is a bombsite. I experience love every day – towards my husband, children, friends and cats – and only yesterday, felt the unbridled joy of seeing a West End show for the first time in months.

These ‘common human experiences’ have no relation whatsoever to the severe, enduring clinical depression that leaves me bleeding on the bathroom floor or semi-conscious in the back of an ambulance.

According to the BPS, though, clinical depression isn’t even an illness. ‘Throughout this document,’ it says, ‘we highlight debates about whether and when it might be useful to think of depression as an illness. In recognition of these debates, we use quotation marks around psychiatric terminology such as “clinical depression” or “major depressive disorder.”’

The mental illness – or ‘experience,’ as the BPS would say – has been reduced to insignificance by those inverted commas. Instead of being ill, I’m ‘ill.’ The speech marks patronise and humiliate me; they give me a metaphorical pat on the back and a condescending, ‘there, there.’

It gets worse.

‘People often assume that mental illnesses “exist” in the same way that broken bones exist, and that there are independent tests for them such as blood tests or scans. However, this is not the case for mental health problems,’ the report continues.

True, there are no tests for the biochemical imbalances that can tip me from stable to clinging to a bridge within the space of a few days, no brain scan that shows broken areas in my head. But to say my illness – the illness of millions – doesn’t exist because it can’t be evidenced? I can’t accept that.

If my depression were simply me ‘milking’ a ‘common human experience,’ how do they explain the fact that medication (usually) keeps me stable, or that trying to come off my anti-psychotic led to the best part of two months in a psych unit? How do they explain the way my mood can crash from totally fine to abject, suicidal despair with no external trigger?

It’s gaslighting on an extreme level, and what makes it desperately sad is that it comes from an authority that should be firmly on the side of those of us who live with mental health conditions like major clinical depression (should I put that in quotation marks?).

Yes, the BPS has its own agenda – as a psychology, rather than psychiatry, society, it wants to promote the role of talking therapies as the antidote to depression.

But its report totally discredits depression as a potentially serious – potentially life-threatening – illness. And that is deeply damaging: we depressed people often feel like we’re frauds, burdens on the system, putting it on, and the oh-so-ironically named Understanding Depression rubs that salt even deeper into the wound.

As a young teenager, in what my then psychiatrist described as ‘bleak despair,’ I was afraid to tell anyone about my depression for fear of what they might think. Twenty-five or more years on, society is getting much better at understanding, and reducing the stigma around, mental illness. But the BPS has undermined all that progress.

How can anyone take depression seriously if top psychologists have dismissed it as a ‘common human experience?’ How can people who are suffering reach out for help – as we’re always being told to do – when the experts are telling us it’s not even an illness?

Understanding Depression is intended to be read by people with depression (I sense an element of Schrodinger here: is it real or is it not?), friends and family, and service providers. It has the potential of a huge reach. And it has the potential to do huge damage.

Right now, I’m glad that I’m in a strong mental state, and not standing on that bridge waiting to jump. Because had I read the report while in a severe depressive crisis, it would have pushed me – literally – over the edge.

Therapy in the time of Covid

First published on MadCovid, 19 June 2020

Throughout the years I’ve been under mental health services, I’ve been through many courses of therapy.

None of them have proven particularly helpful, and nor did I expect them to. I firmly believe that my mental illness is down to screwy brain chemicals and not some deeply repressed past trauma (spoiler: I don’t have any, and have always felt I’ve disappointed my therapists by not having a ‘Eureka!’ moment).

But therapy, I’ve found, is used as a bargaining chip by secondary services. ‘Engage with it, otherwise we won’t help you.’

And so, just before lockdown stopped the world, I ended up agreeing to yet another course of therapy, under duress. My psychiatrist had written those accusatory words in my notes – ‘has not engaged with therapy’ – conveniently ignoring the 12 recent-ish months I spent having weekly one-to-one ACT sessions.

This latest round of therapy – four weeks of crisis management – was forced on me almost by stealth.

I’d managed to get my psychiatrist to remove the BPD diagnosis from my notes, after two other psychs – one private, one working in the NHS day patient unit where I was being treated – refuted it entirely.

But when I agreed to (another) psychology assessment, it transpired that I was being directed down the PD pathway.

I was NOT impressed, but to get them off my back, I agreed to do this short, DBT-based crisis management course.

It was supposed to be a group course, but Covid changed all that. Instead, I was told, I’d be given one-to-one sessions via video call.

Now, I don’t like video calling at the best of times, so this development didn’t thrill me. I find it too intense – conversation doesn’t flow in the same way, body language and silent cues are impossible to read, and I find myself spending all my time trying to avoid looking at my ugly face.

I don’t like group therapy, either (spotting a theme here?) but at least in that situation I can hide in the background: more confident people can take the lead, and there’s less pressure to be the one with all the answers.

Yesterday, I had the third of four crisis management sessions, and I hated it. Their value, for me, has decreased steadily: week one was quite useful, week two was a bit rubbish, and yesterday was awful.

I won’t go into all the details, but the focus was on self-harm and how to prevent it, and the assumptions of why and how people self-harm were completely irrelevant to me.

The therapist was adamant that all self-harm is spontaneous and impulsive, whereas I’m a meticulous planner and always know exactly when, where and how I’m going to do it.

So, the content of yesterday’s session rather missed the point – and I guess it showed. It was rather like being in the Mastermind chair and forgetting everything about your specialist subject.

I found it impossible to give the answers the therapist wanted. I didn’t agree with her theory (or the DBT theory) of why people self-harm. I didn’t identify with the thoughts she assumed were in my head. And I couldn’t provide her with the list of pros, cons and protective factors that she wanted.

Besides, I haven’t self-harmed for several weeks, and it was really not something I wanted to be talking about.

So yes, I was disengaged. I didn’t mean to be rude, but clearly that was how it came across, as the therapist said, in a chastening tone, ‘I get the feeling you don’t think this is helpful.’

Nail: head.

The problem is I’m a people pleaser, a teacher’s pet, and a perfectionist. I hate feeling that I’ve upset someone or that they’re disappointed in me. And so I found myself back-pedalling at speed, enthusing about how great these strategies would be and how they’d undoubtedly save me from self-harm.

In non-Covid times, this wouldn’t have happened. I’d have been doing the sessions in a group, and letting others do the talking when I had nothing to say. When asked for my thoughts, I’d have felt more able to be honest, knowing that someone else would likely be feeling the same.

But with nowhere to hide on a video call, I’m left feeling both guilty and inadequate, and I can already tell that in next week’s session, I’ll feel obliged to make up for this week’s shortcomings. I’ll feel compelled to tick the ‘very good’ boxes on the post-therapy feedback questionnaire.

I’m pretty sure this isn’t the point of therapy.

Still, I’ve proven that I can and will engage, even in the excruciatingly intensity of Zoom counselling. I’ve been a good girl, and no one can say I haven’t tried.

Until the next time they decide that because I’ve not been scrutinised by a psychologist for, ooh, about 12 months, and therefore it must be time to force me to ‘engage’ again.

The next time, though, I won’t. What’s the point? Wouldn’t that coveted therapy slot be better used by someone who might actually find it helpful?

If they kick me out of services, so be it, but I’m done with therapy – especially Covid-friendly Zoom therapy.

Tried it, hated it – and for my own wellbeing, I’m not going there again.

‘What even is normal any more?’

First published on MadCovid, 11 June 2020

As Covid-19 restrictions slowly ease, I find myself wondering whether we’re still in lockdown.

In some ways, it no longer feels like lockdown now I can see my friends and family (albeit at a 2m distance and not on a rainy day unless we’re willing to get drenched in the park), go to the garden centre and pick up a takeaway Starbucks.

But it doesn’t feel like the new normal, either: not with my children still at home for the foreseeable future, and hugs with anyone outside the household still outlawed.

Rather than lockdown, we’re in limbo, and while it’s undoubtedly better for my mental health than the complete enforced isolation of March and April, it’s unsettling and destabilising in an entirely new way.

We’re allowed to see friends in groups of six, but what if they don’t want to see me? I’m scared to ask in case they feel obliged to say yes when they really mean no – and in case they say an outright no, and I crumble into a small pile of rejection and loneliness.

We’re allowed to send some children back to school, but not all of them – including mine. I love them, but the thought of having them at home even into the autumn term fills me with dread.

I’m not equipped to be their teacher, and my eldest in particular is falling behind on his home learning. Every time I receive an email from his school telling me his work is incomplete, I’m overwhelmed by guilt. I’m a terrible parent, failing my children. They’d be better off without me.

I could send them back to school on the basis of my mental illness; the school nurse has told me as much. But how can I when the rest of their friends are still off? How can I explain to them that I’m too mental to keep them at home?

I’m working from home as usual, and as well as the kids being ever present, my husband is now into his fourth month of working from the kitchen table.

Sometimes, I’m glad to have them around, but at other times, I want to scream. I miss my silent, peaceful house where I can work without interruptions. Sometimes, I’m so overwhelmed by their omnipresence that I can’t even cope with them touching me.

I’m angry, too.

I’m angry that my husband, who has given his company 17 years of service, loyalty, hard work and talent, is now at a 50/50 risk of being made redundant, which will blow apart life as we know it.

I’m angry that from next week, we’ll be able to spread our germs all over Primark, and soon be able to have a drink in a beer garden or even go to bloody Legoland, but my kids can’t have the education they deserve, I can’t see my psychiatrist in person, and I can’t have a cup of tea and a proper face to face chat, with my friend.

How is this fair? How is this right? I’ve never felt so politically enraged.

The scientists, doctors and politicians are all in agreement that the pandemic will trigger a spike in new mental health problems, but there’s no acknowledgement of us who already have severe mental illness: those of us who have had intensive treatment cancelled, face to face appointments replaced by phone calls, and prescriptions overdue.

We can’t be ‘cured’ by going for walks, taking long baths, and maybe having a short course of counselling, but when we try to seek support, that’s all they can offer.

I’ve often wished for a magic wand to make my illness disappear and now, greedily, I want another, to make life go back to normal.

But what even is normal any more? What is this ‘new normal’ that we keep hearing about? Will it (eventually) mean washing our hands more often and keeping a respectful distance when queuing, or will it mean months or years more part-time schooling and not being allowed to stay at my parents’ house?

Will it mean my husband is out of work and struggling to find new employment in a sector that’s been hit hard by the pandemic and the government’s mishandling of it?

Will I ever be able to see my psych in person again, or will Zoom appointments become routine?

Yes, I do feel a bit better since lockdown has been eased, now that I can have a walk with friends and drive to the coast or country for a change of scene. But with ongoing isolation, possible redundancy and months more homeschooling hanging over us, I’m having to put everything into not unravelling in this weird state of limbo.

Normal? It’s anything but.

Isolation is slowly killing me

First published on MadCovid, 27 May 2020

Is it Week 8 of lockdown? Week 9? I don’t even know any more. All the days are blurring into one, all as bleak as each other.

Life may be the same, the same, the same day in day out, but I’m all over the place. I’m hanging on by a thread.

I’m in lockdown with my husband and kids, but I feel so alone. I have no one to talk to. I can’t burden them. I can’t pick up the phone and ring a friend; they all have stuff going on, and I can’t pour my own misery on top of theirs.

The more alone I feel, the more I shut myself off. Withdrawing from people is disastrous for my mental health, but while I’m longing for my friends, I don’t reply to their messages, I press ‘decline’ when they ring. I’m a burden, a problem. They only keep in touch because they’re kind people – I know that they’re just doing their duty, and must breathe a sigh of relief when I don’t respond. They all deserve this enforced break from me. I expect they’d be happy if they never saw me again.

Isolation is slowly killing me. I start to feel as if I could disappear and everyone would be grateful. The experts talk about ‘protective factors,’ but they don’t know what it’s like when you’re sure beyond any doubt that your protective factors would be better off without you.

There’s a motorway bridge a 10-minute walk from my house, spanning the M25. At the end of February, I stood on that bridge, the wind lashing my face, freezing hands gripping the railings. Who knew that motorway bridge railings are only waist-high? I was anticipating having to climb a six-foot fence, not to be able to just lean forward and fall.

I was preparing to jump, but the cars and the lorries kept coming and coming and coming. I wanted a break in the traffic so I could fall into a gap and not traumatise the driver who hit me.

Then there was a woman behind me, beside me, telling me not to do it. I let myself be led into her car – how weak and pathetic! – and taken home, where the police, alerted to my absence by my husband, were waiting.

Now, my brain keeps dragging me back to that bloody bridge, goading me to just go there, just have a look, just stand. ‘Now’s a better time than ever,’ it tells me. ‘The M25 is so much quieter than usual; you could just jump.’

I try to push these thoughts away, but they have their claws in me. ‘They’re just intrusive thoughts; they can’t hurt you,’ I tell myself, but they can.

Someone from the CMHT rings for my weekly check-in, and I find myself telling them that I’m having dark thoughts. Before I know it, they’ve arranged daily ‘welfare check’ calls, but when they phone I can’t be honest. If I tell them I’m not okay, they can now do a Mental Health Act assessment over the phone without even having to see me, and I CANNOT end up in hospital again.

They tell me to go for a walk in the sunshine, but they don’t know that everywhere I walk, memories of suicide attempts follow me. The reminders are everywhere: the bridge, the riverbank where I was picked up by police having taken an overdose, the pharmacy that sold me enough tablets to kill myself.

I go to Tesco and, observing perfect social distancing, I buy a packet of razor blades. I want to use them on my wrists, but I know I can’t leave my husband working from home and looking after two kids on his own. Once lockdown is over, it’ll be a different story, but for now, I use them on my legs instead.

I earn myself an ambulance ride to A&E, a quieter A&E than I’ve ever been in before. There are three of us in the non-Covid bit, all mental. This pandemic is killing us for different reasons.

The facemask they make me wear is so hot and claustrophobic I can barely breathe. I don’t know how the medical staff survive 13-hour shifts in full PPE. They are warriors. And unsurprisingly, they’re underwhelmed by my mask-induced panic attack. I almost expect them to tell me to man up.

I see the psych liaison team within an hour – so different from the 12 hours plus that I’m accustomed to. There’s nothing they can do, though – no crisis team, no consultant appointment, no acute day treatment unit. I was being treated there pre-lockdown, before coronavirus forced it to shut its doors and leave 30-odd depressed/psychotic/suicidal patients without ongoing care.

Instead, I’m sent home with several new lines of stitches to add to my patchwork, and a promise that the CMHT will keep calling.

I’ve been posting photos of lockdown life on Facebook: happy children, happy cats, lovely nature. But now I’m not posting anything. When I go quiet, it’s a sure sign that I’m not in a good place, but what can I do?

The glue that holds me together is melting and I don’t know if I’m strong enough to get through this.

Having my treatment come to such an abrupt end was devastating

First published on MadCovid, 23 April 2020

There was a shocked silence in the lounge area of the acute day treatment unit (ADTU): a silence that lasted a good 60 seconds.

Then the questions started. Did we have to go home right now? Would we get home visits? What was going to happen about medication management?

It was March 18 – a few days before the UK officially entered lockdown – and we’d just been told that the ADTU was closing its doors with immediate effect to prevent the spread of coronavirus.

I’d been attending the unit for two weeks, having narrowly avoided being hospitalised, and although I was still very poorly, I was benefiting from some amazing care: twice-weekly meetings and meds reviews with an excellent psychiatrist, daily one-to-ones with gentle, kind and caring mental health nurses, and a safe space away from everyday life.

Having my treatment come to such an abrupt end was devastating. I was less unwell than I’d been two weeks ago, but I was far from stable, and the prospect of suddenly having my support withdrawn was frightening.

The only consolation was that my allocated keyworker – a lovely mental health nurse called Theresa – would be doing daily home visits.

Or so I thought.

The next day, my husband woke up with a temperature, and we knew that we’d have to self-isolate for the next 14 days. And that meant no visits.

Theresa phoned daily, but without face-to-face contact, it felt awkward. I found it hard to express myself, and although Theresa could tell from my voice if I was having a particularly bad day, there was little she could do.

I felt lost, cast aside, cut adrift.

Two weeks after the unit shut, on a Friday, I was discharged from the ADTU back to the CMHT. Usually, this would have been a joint appointment with the mental health nurse and my community psychiatrist, but it all had to be done by phone. And the psych – who, in fairness, is the best I’ve ever had – didn’t even ring me until the following Monday as he was dealing with an emergency.

The past month has been – as for everyone – full of ups and downs.

My meds were changed while I was in the unit, and getting prescriptions has been a challenge. At first, the ADTU nurse was posting them through my letterbox, but since being discharged, I’ve had to get them from my GP. He’s yet to receive my discharge summary so has no official evidence of the meds change, and wondering whether or not he’d prescribe the right things was a worry. And my brain is so foggy that I’ve lost track of what to take and when. Thankfully, my husband is sorting it out for me.

Even though I’d been admitted to ADTU acutely suicidal, I now have no support in the community at all. I previously had an excellent care coordinator who was my first port of call when I was unwell, but she was taken off my case last summer, a few weeks after an inpatient admission, as it felt I was managing well enough to not need her.

I’ve also lost my informal support network. My friends keep me going, but of course I can’t see them now, and although we’re keeping in touch on FaceTime and Zoom, I really, really want a hug.

Compared to many mad people, I’m lucky. I live with my husband and two kids, and as a freelance writer, working from home is normal – although work has been very busy, which brings its own stresses.

My husband was working from home before lockdown as I wasn’t safe to be left alone, and that’s continued. He’s shouldering a lot of the domestic tasks to take the burden off me. But I have extreme guilt about the amount of time my children are spending on screens and my inability to entertain them, reaffirming my belief that I’m a failure as a parent and they’d be better off without me.

My mood has stabilised a lot, thanks to the changes in my medication, and although there have been days where I felt deeply, deeply depressed, days where I’ve lost my rag, and days where I’ve sobbed down the phone to my friend, I’m no longer suicidal, but that doesn’t stop me being scared about what will happen if my mood crashes again.

My next psych appointment is in three months’ time, so who knows whether it’ll take place in person or on the phone. If I need help, I have to negotiate the horrors of the duty team – and no doubt be told that all I need to do is have a nice bath and a cup of tea.

If things get seriously bad, I know I’d be at risk of being sectioned and hospitalised, and this time there’d be no visits from friends and family.

I also feel trapped. I know that if the suicidal thoughts come back, I absolutely cannot act on them. It would be grossly unfair to leave my husband alone with our children at this time, and grossly irresponsible to waste hospital resources if an attempt failed: the last time, I was in ITU on a ventilator for several days. It feels like my escape route has been blocked off.

Covid itself hasn’t affected my mental health – thanks to my ongoing depression, I have a blasé attitude to whether I live or die. But lockdown definitely has.

The lack of certainty, a predicted end point, is really hard. I’m struggling with the juggle of work and kids, and doing a bad job with both. The stress sometimes feels as if it might tip me into hypomania – I’ve been getting that familiar restless, fizzy-headed feeling – and while that would be welcome right now, it’s always followed by a rapid downward spiral into an all-consuming low.

I know this will end, but in the meantime, I have to keep going as best I can: taking my meds, talking to friends, keeping a mood diary, using PRN, and phoning duty if I really have to. I’m trying to focus on self-care, and treating myself to afternoon naps, evenings in my hot tub, and chocolate.

Daily life is a struggle at the best of times, and this is definitely not the best of times, but I just have to focus on riding this time out and coming through it in one piece.

BPD: the shame of diagnosis, and the fight to get it overruled

At some point in the last five or so years, a second diagnosis was added to my primary one of recurrent depressive disorder: BPD, or borderline personality disorder.

It was added without any discussion – without the psychiatrist even informing me. And it’s left significant mental scars.

I’ve seen a succession of psychiatrists throughout my time under mental health services: mostly junior doctors on short rotations who had no real chance to get to know me. It was one of these who gave my the BPD diagnosis by stealth.

There’s a set of criteria that can lead to a diagnosis of BPD. One in particular – the tendency to self-harm – fits me; the majority of the others don’t.

These include difficulty forming and maintaining relationships (I’ve been married 17 years, have close female friendships and still see my childhood friends every Christmas); extreme mood swings that can veer from elated to depressed within a matter of hours (my periods of depression last weeks or even months); and outbursts of intense anger (sure, I shout at the kids, but I’ve never been one to throw screaming tantrums).

BPD is also often associated with past trauma – and my history is trauma-free.

When it came to diagnosing me, however, I believe the psychiatrist – the one who was in the early stages of training, and who’d seen me perhaps three times, for 20 minutes at a time – made the simplistic and lazy decision that self-harm = BPD and saddled me with a label that has hugely affected my self-esteem and already poor mental health.

There’s nothing quite like being slapped with a PD diagnosis to make you feel like utter crap about yourself. Imagine being told that your personality – the very essence of who you are – is fundamentally flawed. That there’s something inherently wrong with who you are as a person.

Self-hatred is something that I battle with anyway, and being told that I had a disordered personality only served to ramp those feelings up. I became even more convinced that I was evil at heart, filled with badness. I felt as if I didn’t deserve any of the good things in my life, including my husband, kids and friends. I pushed them away, certain that everyone would be immeasurably better off without my toxic presence. I was sure everyone was judging me, talking about me behind my back, looking for ways to extricate themselves from their relationships with such a poisonous individual.

Attitudes towards people with BPD are overwhelmingly negative. They’re seen as melodramatic, attention-seeking, needy and manipulative. Self-harm and suicidality is considered impulsive yet calculated to achieve maximum effect: ‘Be nice to me or I’ll kill myself.’ It’s a common belief that BPD sufferers can’t be helped – or aren’t deserving of help.

Worryingly, many mental health professionals subscribe to this definition of BPD – and that creates very dangerous situations when it comes to treatment and support.

My BPD label has put me at serious risk. I’ve been sent home from hospital immediately after suicide attempts with no follow-up. I’ve been discharged from the crisis team at the same meeting where I told them exactly how and when I planned to kill myself – and I followed through with those plans. I was discharged from inpatient treatment despite pleading with the psychiatrist to keep me in for my own safety, because ‘we can’t help you here’ and ‘you have to take some responsibility.’

I literally felt that my life was disposable.

Would any of this have happened if I didn’t have a BPD diagnosis? Would I have been treated with such disdain and even contempt? I don’t think so.

I’ve seen the way other people with BPD are treated in psychiatric units, too. ‘There goes another phone; that’s the second one she’s thrown across the room this week.’ ‘Oh, is she head-banging again?’ accompanied by a roll of the eyes and a barely concealed smirk.

The other problem with a BPD diagnosis is that trying to get it overturned often adds ammunition to the case against you. At times, I’ve been extremely angry and upset about how I’ve been treated by professionals. I’ve walked out of meetings and demanded the crisis team leave my house.

These emotions have – in my view – been entirely reasonable and appropriate responses to receiving inadequate, inappropriate or unprofessional treatment, but have been interpreted as me being irrational, emotionally unstable and manipulative: all traits that are associated with BPD.

BPD is undoubtedly used as a punishment diagnosis, applied to people who don’t respond to conventional treatment pathways, or who dare to challenge a system that treats them poorly. Women are much more likely to be diagnosed with it than men, like hysteria was in the past. It reduces us to hysterical, histrionic beings who aren’t in control of our emotions: irrational, unstable, and most likely hormonal. It’s insulting, simplistic and belittling.

People have said to me that my BPD diagnosis didn’t matter, that I didn’t even need to tell anyone about it. But you know what? It mattered to me. Even if I’d been the only person ever to see those letters on my medical records, it would still have mattered to me.

It hurt me. It harmed me. It could have led to my death – partly because of how awful I felt about myself, and partly because services treated me as if my life wasn’t worth bothering with.

In the past few months, though, something huge has happened: I’ve been assigned an experienced consultant psychiatrist who is, in my opinion, an absolute wonder. He’s knowledgeable, considerate, kind, wise, and committed to getting to know me.

He also LISTENS.

Today, I found myself having a discussion with him about the BPD label, the harm it’s done me, and the impact it’s had on my treatment. And, having explained my feelings and my case against it, and discussed the pros and cons, he agreed to remove it from my diagnosis.

It feels like a major, major win.

Of course, my mental mind being what it is, I’m now questioning myself. Was the doctor annoyed with me? Did he agree to scratch the diagnosis just to shut me up? Had I, in fact, demonstrated the very traits that I was protesting against, and showed myself to be manipulative and demanding?

I get so sick of my brain sometimes. I wish I could just be happy that the diagnosis has been overturned, and not overthink the reasons behind it.

There’s a vocal movement amongst mental health patients against the BPD label even existing. Many people express the same feelings towards their diagnosis as me, and report the suffering that it’s caused them, and its implications for treatment: for example, not being offered the trauma therapy that they so badly need. But do I think the diagnosis as a whole should be scrapped?

I’m not sure. For all of us who’ve been damaged by it, there are also those who feel it represents them, explains their struggles and helps them become more self-aware. It’s an incredibly complex and delicate matter, but does the harm that the diagnosis causes to some justify taking it away from people who feel informed and enlightened by their BPD diagnosis?

I’m not suitably qualified to say. But I’m 100% certain that what is not okay is to diagnose people with BPD by stealth. To apply it to people with no discussion or negotiation, and refuse to listen to their opinions. To use it to justify poor treatment, disrespect and even off-rolling, leaving people at risk. To slap it on people who are harder to treat, or who rightly feel upset or angry that their needs are not being met.

My diagnosis has been removed, and it’s a relief; the psychiatrist has agreed to treat my self-harm and suicidality – which can be impulsive – as separate entities to BPD. But striking it off my records now doesn’t undo the psychological damage it’s caused me. I’ll always have that feeling of ‘what if I *am* a terrible, flawed, repugnant person?’ and my BPD diagnosis has fed that feeling and helped it ferment.

Preventing a wound is always better than patching it up after the event.

How I wish that I’d been afforded enough respect to have had a discussion about the diagnosis before it was applied to me.

 

And then it all went wrong

The first half of 2019 was not a good time. One minute I was turning 40, with all the associated celebrations; the next – the weekend I was meant to be going to Paris with a friend to continue the festivities – I was in hospital.

From February until June, I was in almost constant crisis, with serious self-harm, suicide attempts and two long inpatient stays, missing Mother’s Day, most of the Easter holidays and May half-term with my children.

But then there was a change. A psychiatrist listened to my opinions on my medication, and agreed to start me on a new one – one that had never been prescribed before because it wasn’t in strict accordance with the ‘useful’ NHS flowchart that states what meds should be prescribed and when, but doesn’t specify what to do if options A, B, C and S, T, U have been exhausted.

And it worked. It really, really worked. Within weeks – maybe even less – I felt not just better, but happy. Over the following months, I enjoyed a three-week family holiday in America, theatre trips with my son, seeing friends, plus the everyday stuff that is so hard when I’m unwell: reading, eating, even sleeping.

For the first time in years, I wasn’t waking up with the cloud of depression over me. The first thought on my mind was no longer, ‘Is this a good day or bad day?’ They were almost all good. They just were.

Until they weren’t.

It happened with terrifying speed. My mood was slightly low, slightly off-kilter, but not so much that anyone really noticed. I posted a bit about it in private groups, but I didn’t tell anyone in real life. It was FINE. I was fine.

Then, on a Wednesday evening, I was routinely filling my pill organiser when the thought popped into my head, entirely unbidden and unjustified: ‘You could just take all of those tablets.’

It was a ridiculous idea. I wasn’t even depressed; why on earth had my mind suddenly gone back to a place of self-destruction?

But in the way that intrusive thoughts have, it took hold, wrapped its tentacles around my skin, needled my brain with its persistent claws.

Still, though, there was no need to tell anyone. I didn’t feel unsafe, and had no intention of acting on the thoughts. I was a bit fed up that my mood had slipped, but I definitely wasn’t suicidal.

On Saturday night it all went spectacularly off the rails.

I’d stayed up late watching old episodes of ER, while my husband had gone up to bed. I went into the kitchen to take my nighttime meds. And for some stupid reason, I decided to take them all. Every single tablet in my dosette box. A whole week’s worth of three different prescriptions, plus a bit more on top.

I don’t remember much from that point on. My husband found me unconscious perhaps an hour later. He called an ambulance. I was put into an induced coma on scene and intubated so they could take control of my breathing. I had a GCS of three: the lowest you can get without being dead.

I’m not going to dwell on the next few days in ITU. Let’s just say I’m very lucky to be alive, not to mention with no residual physical damage that we know of. Even my atheist husband grudgingly accepts that I was being watched over.

But while I’m physically recovered, now I’m having to put myself back together again mentally.

There’s so much going through my head…

Guilt about what I did.

Anger at myself for blowing six months of recovery by listening to those stupid obsessive thoughts.

Gratitude and relief that I didn’t die.

Shame that makes it impossible to talk to the people I usually confide in, because it’s all my own fault.

Embarrassment for causing such a drama.

Despair that I’m not actually recovered after all.

Grim resignation that I don’t think I’m *ever* going to be properly recovered.

Anxiety about Christmas and trying to be normal, while also not wanting anyone to fuss over me.

I’ll be okay. I’ve got a fantastic psychiatrist (at last!) who is wise, knowledgeable, considerate and respectful. We’ve talked about what happened, and agreed to treat it as a (pretty serious) blip and not ruminate on it, nor let it undermine six months of really good progress.

We have a plan for medication, a plan for exploring therapy in the New Year to help me get better at resisting intrusive thoughts, and a crisis plan to get me through until then if need be (although I don’t think I will need it).

Still, though, it feels as if I’m ending 2019 in the way it began: with a cloud over me. I’m back to waking every morning with ‘depressed/not depressed?’ as my first thought, and it’s exhausting. I was feeling so hopeful about the future, and now – well, I’m still hopeful, but I’ve had a serious reality check.

I just wish I could rewind the clock. Tell myself retrospectively not to be so stupid, that thoughts are just thoughts and don’t compel me to act. But when your brain has spent so many years trying to destroy you, those thoughts are so hard to resist.

I started 2019 determined to go a whole year without ending up in hospital. I failed in quite magnificent fashion. Will 2020 be any better? Will this really have just been an almighty blip that I can come back from?

I know I will always have mental illness, and that my treatment is just that: treatment, not a cure. I try to be pragmatic about that, and I’m still trying – despite this huge setback – to cling onto those six months of good health and focus on getting back to that position.

But it’s just so damned hard sometimes.

Mental health cruelty is not a historical issue

Over the past week or so, there’s been an impassioned Twitter discussion where mental health patients have shared their experiences of judgemental, disrespectful and downright cruel treatment from health professionals, specifically in the context of self-harm.

It was triggered by a series of tweets from the Government’s advisor on suicide prevention, who posited the opinion that this sort of treatment is ‘unusual’ nowadays.

Twice in last week I’ve been told of cruel comments by health staff to people who had self-harmed. I really believe this is unusual now but it shows there is something deep-rooted that we have to eradicate.

— louis appleby (@ProfLAppleby) November 24, 2019

Instantly, a huge number of people replied giving recent examples – some truly shocking – of how they’ve been subjected to borderline inhumane treatment at the hands of HCPs, particularly in A&E.

Still, though, the prof defended his position, implying that these scenarios were ‘common a few years ago.’

So, to be clear, I am wondering how widespread this is now, after anti-stigma campaigns & NHS guidance. We all know it was common a few years ago but that’s not my point. https://t.co/d2TpUt7bst

— louis appleby (@ProfLAppleby) November 24, 2019

 

I’m one of the many, many people who can testify that prejudicial and downright cruel responses to HCPs towards those of us who have self-harmed or are suicidal are still hugely prevalent – and causing untold damage to patients who have hit crisis point.

Here are just a few examples.

In Minor Injuries, being treated for self-harm, the nurse said to me, ‘I’ve never known anyone do this and still be in a relationship. You’re lucky your husband hasn’t left you.’

On a medical ward after a suicide attempt, and with new self-harm injuries visible, an HCA told me, ‘You look like you’ve been attacked by a cat.’

On the same medical ward, being treated for an overdose, I was too distressed and nauseated to eat. The nurse in charge said, ‘If you don’t eat something, we’ll put a tube down your nose.’

Related to this, on a psych ward and unable to eat (my appetite disappears when I’m severely depressed: not an uncommon symptom), an HCA came into my room and said, ‘Oh, we’re on hunger strike now, are we?’

Also on the psych ward, I was found cutting in my room. The nurse sighed and called for colleagues, saying in a world-weary tone, ‘She’s self-harming.’ She then ordered, ‘Give me that [blade]’ and told me to clean myself up with a wet wipe, even though the cuts were deep and needed medical treatment. Not once did she or any of the other staff show any concern for my mental state, or even ask why I’d felt the need to hurt myself.

In a busy A&E, while being put on a drip to counteract the effects of a large overdose, I asked whether it was possible to stay on the trolley rather than moving back to the seating area where I’d been sitting, despite being violently sick. The response? ‘Not a chance.’

I know the department was full of other people in need of beds, and in the end, I did get to stay on the trolley, but I was made to feel utterly worthless, and as if I was being punished.

Other forms of cruelty are implicit rather than overt, but still harmful.

I’ve had cuts that needed stitching hastily and dismissively repaired with steri-strips, which were inadequate and have left me with severe scarring.

I’ve had stitches without sufficient pain relief.

I’ve had a massive panic attack in A&E awaiting a mental health bed; my husband summoned a nurse to tell her I wasn’t well, and she pretty much shrugged and walked off.

I’ve been told, in a specialist psychiatric hospital, that no one would remove stitches for me, and I would have to get my husband to take me to Minor Injuries (I ended up taking them out myself).

I’ve passed out, mid-panic attack, at the feet of a mental health nurse, been asked, ‘What are you doing?’ and told to, ‘Get up.’

I could go on. And on and on. And others on Twitter can list just as many examples of casual cruelty – many of them far worse than I’ve ever encountered.

Of course, not every HCP is so judgemental or unkind. I’ll never forget the kindness of a young A&E doctor, who simply laid his hand on my back while I was wracked with vomiting. Or the A&E nurse who held my hand and said, ‘I’ve been where you are. You’ll get through it.’ Or the same nurse who, while making the mandatory call to social services (it’s an automatic referral in this area if you have kids and present at A&E with self-harm injuries or having attempted suicide), told them, ‘She’s a lovely lady. I have no concerns.’ Or the lovely doctor who let me suck on gas and air while he was doing my stitches.

Such small gestures, but such kindness.

These kindnesses will stay with me forever, but so will the harsh words, the dismissive treatment, the way I’ve been made to feel like a time-waster, an attention-seeker, a drain on services.

There’s a term for the damage that this compassionless, mean-spirited treatment can cause: iatrogenic harm. It refers to physical or mental harm caused by the process of treatment, including the actions of HCPs. And if you take a look at Twitter, you’ll see hundreds of people who’ve been mentally scarred in this way.

How I wish that Prof Appleby was right in saying that such cruelty is a thing of the past, or at least vanishingly rare.

But what I wish most is for HCPs to show a little humanity to those of us who are at the lowest possible ebb, and who have reached out a desperate hand for help.

I wish they’d remember why they went into medicine, before they became hardened to their patients’ suffering.

I wish they’d realise that NOT ONE of us would have chosen this life for ourselves.

And I wish they’d realise how much their words and actions hurt.

What can be done about it? I don’t know. If we report such cruelty, it’s our word against theirs, and because we’re written off as mental, crazy, hysterical – and often labelled with BPD – our word counts for nothing.

Something has to be done, though, Prof Appleby.

Because the scars are deep. They’re real. They can cause untold psychological damage, and even be fatal.

And they could all be avoided with a simple drop of human kindness.

 

Where should the money go?

It’s no secret that mental health services are seriously limited by their budgets. Just ask any of us who have waited months for counselling, needed a psych bed when none were available, or been discharged from a service long before we were ready – or even safe.

But there’s another issue when it comes to mental health budgets, and that is, where should the money be spent?

At the moment, a lot of funding is channelled into the IAPT scheme. That’s Improving Access to Psychological Therapies, or, as it’s known in some areas, the Wellbeing team/service.

IAPT allows people with mild to moderate mental health conditions like anxiety and depression to access psychological therapies more easily. In many areas, this means they can self-refer. Currently, a million people every year are helped by IAPT.

This is all well and good. No one would argue that people with mild to moderate mental illness should be able to access support. After all, early intervention could prevent people’s mental health deteriorating, as well as potentially saving millions of sick days every year (kerr-ching!).

But what about the rest of us? Those of us who have more serious and enduring mental illnesses, like severe recurring depression, bipolar and schizophrenia?

This is where resources are seriously lacking – and it’s dangerous.

Throughout my ‘journey’ with mental health services, I’ve been at the mercy of an underfunded NHS.

I’ve been sent home from hospital after attempting suicide with no ongoing support – on more than one occasion.

I’ve had to wait days on one-to-one observation in a general hospital because no psych beds were available.

I’ve been discharged from a mental health hospital despite pleading to be allowed to stay because I felt so unsafe, and told that I had to ‘take responsibility’ for my actions.

I’ve had countless crisis team late arrivals and no-shows, not to mention being discharged from the team after a meeting during which I was explicitly clear that I was going to end my life, including how and when – and yes, I did follow through with my plans.

I’ve had lost count of how many different psychiatrists I’ve been under in the space of six years or so, presumably because the NHS can’t hang onto its doctors, increasing caseloads and petty bureaucracy to the point that they simply can’t cope.

Most recently – just a couple of weeks ago – I had my care coordinator taken from me, even though I was in hospital as recently as June.

I’m far from alone. Spend five minutes on Twitter and you’ll find countless people who’ve been through similar experiences, or worse. And when you have a mental health condition, being treated like this can leave you traumatised and exacerbate your illness.

I’ve no problem with IAPT in principle, but I do have a problem with diverting so many resources into the scheme that people with severe mental illness (SMI) can’t get the help they need because the money isn’t there to finance it.

It’s a bit like treating a patient with a headache at the expense of one who has a brain tumour.

I understand why money is being sunk into IAPT. The NHS is under pressure to produce tangible results where people are ‘cured’ quickly and easily and discharged from services.

That’s far more achievable if they prioritise people with mild to moderate mental health conditions. Many of them can be effectively treated with a handful of CBT sessions and perhaps a short course of antidepressants, and be safely discharged.

This is no less than they deserve – but it also allows the NHS to ‘prove’ its successes. Patient treated? Yep. Patient recovered? Yep. Patient discharged? Yep. There’s demonstrable evidence that the initiative is working; the CCG managers get a big pat on the back and the CQC is happy.

(I’ll gloss over the fact that despite the relative success of IAPT, the most recent review shows that 41% of practitioners have been pressurised into manipulating data, for example by coaching patients to give the ‘right’ answers, and discharging people who are showing positive results early, to avoid having to report a subsequent bad recovery score).

Those of us with SMI, however, don’t reflect well in performance data and league tables. We’re harder to treat, and it’s usually a longer, slower process with a lot of trial and error. Our conditions may be lifelong. We have relapses of varying frequency and severity. We need more complex care, such as inpatient treatment, crisis team support and care coordinators. We can’t be ‘cured’ by a short course of therapy or frontline meds.

In the eyes of the NHS and the powers that control its budgets (I’m looking at you, Boris), we’re a money sink compared to those who can be successfully treated by a short-term intervention, so it’s no surprise that the resources are channelled into services that appear to have greater success rates.

In no way am I suggesting that people with less severe mental health conditions don’t deserve help. They absolutely do, and it’s right that they have access to that as swiftly and easily as possible.

But where does that leave us, the long-term, more complex ‘service users,’ who often find ourselves seriously unwell and unable to get appropriate help because there’s not enough money to pay for psych beds, crisis team intervention, and consistent, high quality care from secondary and tertiary services?

I can tell you where: at risk.

Back to blog?

It’s been a REALLY long time since I last blogged.

Why?

There are several reasons, really. For a good 12 months or so, I was writing on mental health for Metro, which satisfied the writing bug. It was a nice combination of productive and cathartic, despite being appallingly paid, and led to other media work: BBC News, BBC Breakfast and various radio programmes.

Bizarrely, despite being naturally introverted, and the intensely personal nature of what I was talking about (self-harm and suicide), I discovered I loved doing TV. It gave me a confidence I didn’t know I had, and a real buzz. I was damn proud of myself, to be honest.

Over the past year, however, the Metro work has dried up, with no explanation, no answer to emails. Perhaps mental health isn’t getting them an audience any more, but I’ve been ghosted, to use a very millennial term. And with it, my mental health advocacy has withered and died. I miss it.

My blog inactivity is also partly explained by the fact that I’ve spent much of the past two years very, very unwell. More of that to come over the following days, if the blog bug bites again, but I’ve had long periods of being too poorly to even think of writing.

And then there have been periods where things have been, well, normal. And in these times I don’t feel the same urge to write as I do when things are somewhere between low and crisis point.

So, all in all, my poor blog has been neglected.

Now, though, I find I want to write, and with no paid journalistic outlet for my (literally) mad ramblings, I think it’s time to breathe new life into this blog.

In the past two years, I’ve been through so much under mental health services, and there’s stuff I need to say. There are experiences that I need to document, to share, maybe even to bring to a wider audience. I’m still shell-shocked by some of the things that have happened, and I want to get it out there.

When I was last blogging, I was doing so privately. This followed some pretty awful experiences where my suicidal behaviour was reported to both my husband and services; the fallout was spectacular and after that, I locked down my privacy settings.

But now I’ve decided to press the ‘public’ button again. Now I’m not in a crisis situation, I don’t need to worry about what’ll happen if I blog about my experiences in the pit. I’m not ashamed of what I’ve been through, and if people want to trawl back through my old posts, that’s fine with me – maybe it’ll give them a clearer insight into the hell that is severe recurrent depression.

Maybe I’ll find my writing mojo and start to unpick some of the crap that I’ve been through since I last blogged. Maybe I’ll find that actually, I don’t want or need to write about it after all.

But this post is a start. Let’s see where it goes.