Me me me

Dullness warning: I am going to assume you’re at risk of boredom here, not just because I have already posted twice in a week, but also because this is going to one of those posts that’s using writing as therapy in attempt to work through some stuff.

Trigger warning: I will be talking a lot about suicidal thinking.

One thing about having been a blogger for a long time is that I can look back at old posts and see what has changed over time. But I can also look back and see that in a way nothing has changed, that I just go through loops. I’ve blogged in the past more than once about a situation very similar to the one I find myself in, but I need to get it all out again, so no need to read on if you’ve heard all this before.

I am at war with myself. I have at least three separate thought processes going one. One is just me, normal me, but another is obsessed with suicide planning. I can run the primary script without it being noticeable to anyone that the obsessional one is going on in the background. I can talk about the future, whilst planning to make sure I don’t have one. I do at times feel pretty low, but in no way am I sitting around feeling that my life/pain is intolerable and therefore I need to take myself out of the equation. In fact, the planning part of me feels eerily calm. It tells me that making an attempt is just something I have to do, have to get over with, like I must do my tax return before the deadline.

The third script is slightly psychotic one. In the past week I have had a couple of really terrifying moments where I realised that “They” had started messing with me again (it’s too complicated to explain the whole “being persecuted by extra-dimensional beings” thing here, so if you are a newer reader or would like you memory refreshed, you can read an account here). I have had the frightening feeling that They have implanted the thoughts of suicide into my head because they want me to kill myself. I have become aware of things that always frighten me when  I am clinically paranoid: banana skins, twins, weird tech glitches, being alone of the top deck of a bus. This has extended towards being scared to even see an empty top deck on a different bus, and to worrying when the post comes about what seem like messages on the outside of the envelopes. Always, my Them sense is tingly, although thankfully it is not as bad as it has been in the past. I have also experienced periods of mental confusion, which has happened in the past when I have had what my consultant calls “psychotic-type” experiences.

I had been doing so well! Not well enough to work, and unwell enough to have to be careful with myself at all times, but nothing like this since about September last year. I can only attribute my current situation to stress. Some time ago Tom and I decided to relocate so that we could enjoy his retirement away from the hubbub of London. Unexpectedly, the perfect house popped up in a perfect location in Wales, and we decided to go for it. In the space of two months we have seen viewed the house, had an offer accepted, got our pace ready for the market, and accepted an offer. It’s been so swift because we hadn’t expected to find somewhere to move to so soon, so our flat wasn’t even in a fit state to be sold. I couldn’t even begin to guess how many hours we have put in cleaning, painting, wallpapering, sorting possessions, packing them up, driving to the dump, putting things in storage. It’s been a very pressured time. Mid May is my deadline for an attempt because that when contracts are due to be exchanged and it feels quite sensible not to create more legal mess by doing it after that point.

The intensity of the suicidal thoughts ebbs and flows, but I have found myself doing more and more researching, and giving more and more consideration to which part of previous plans might be useful. So the normal part of me is beginning to consider myself at risk. I know that things are not as far gone as when I wrote this post back in November 2014 (November 2014? I have been going through this same shit for two and a half years?!) but it’s the same pattern. I’m trying to nip it in the bud but it’s so, so hard. It’s so, so hard to open with Tom about it, but I probably more successful than in the past. As you imagine, part of me doesn’t want to hurt him, and the sneaky part of me’s not keen keen to share because it might/will shut down my options.

Yesterday while Tom was sleeping I found myself crying and crying because I don’t feel that I will ever get to live in that beautiful house in Wales. The normal bit of me was pointing out hat I could avoid that disappointment simply by not killing myself, but more and more I feel that it’s out of my hands, that I have to go along with the plan.

I’m concerned enough that I have have my Trust’s triage number in my phone, because that’s how you access Home Treatment Team these days, self-referral. Part of me longs for the HTT, to be back under that close monitoring so I don’t have to do all the monitoring myself, and yet I remember how at times I railed against it, how fed up I got with going back to them time after time. My Care Coordinator is ringing on Tuesday, but it’s a Sunday as I write this and I don’t think I can wait that long, so I’ll be calling tomorrow.

 

 

Image shows three odd shoes and is course of in pastel via Flickr

Posted in Bipolar, Crisis care, Depression, Mental health, Mental health services, Mood disorder, Psychosis, Stress, Suicidal thought, Suicide, Uncategorized | Tagged , , , , , , , , , , , , , ,

Research dissemination – can you help?

The McPin Foundation has

 

The Primrose project: severe mental illness and physical health

The McPin Foundation are recruiting to a new lived experience dissemination advisory group (LEDAP).

The Primrose study, coordinated by McPin and University College London, has been looking at physical health among people with severe mental health problems and now the team need help with dissemination of their research findings. We are looking for about 10 interested mental health service users or carers to work together to tell people about the study and what it found. There are details about the study on the McPin website, as well as some specific information about the LEDAP group and how to apply.

Members of the LEDAP will be paid for their time, and reimbursed for travel.

Interested? Please follow the instructions on the information page.

Posted in Uncategorized

Troubles

So this week Prince Harry made a number of statements on mental health. I am really glad that he feels able to disclose a need for treatment around the death of his mother. It would be very sad to think of him going on and on in his adult life without being supported through grief which must have been incredibly complex, given the awful circumstances of that loss. He can only have had a very tough time facing such an immense loss at such a young age under the scrutiny of the press and the public. But things got a bit murky when he used that as a jumping off point for speaking about mental health in general. (I’m not going to go into the lack of a level playing field between those with immense material resources and of the rest of us, you can read my earlier thoughts on privilege and mental health here.)

Kensington Palace summed it up on Twitter like this:

“Mental fitness relates to every single one of us, together we can smash the stigma.” “Everyone struggles, we are not robots.” (All one tweet, I’ve preserved the punctuation).

I keep hearing this lately – especially I think from psychologists, and especially I think from the academic variety. The idea that “we all struggle”. We all have “troubles”. We all have “difficulties” and we all experience “distress”. Let’s not use diagnostic language, because that increases stigma. Let’s not use words like “condition” or “disorder” or “illness” because that creates a them and us, the unlabelled and the labelled, again fuelling stigma. Let’s focus on the commonalities between us all. Where’s the harm in that?

I can’t believe that I have to point out the harm, but clearly I do.

Here goes.

You should see the state of my face. Out of the blue, it’s covered with open pores. I don’t know what the cause is. I’ve found a very few references on patient forums about lurasidone causing skin and hair to become more greasy, but not enough to call it a side effect. Whatever the cause, I hate it. On the one hand I feel like a spotty teenager, yet it simultaneously makes me feel old. My skin is not what it was.

So I have problem skin. It’s a skin problem. I’m actually really unhappy about it and have wasted money on products that almost certainly don’t work. I’ve bent friends’ ears about how I have lost control of my skin and it’s affecting my self image. I know that’s pathetic, but it all feeds into my ongoing self-hatred and body issues, OK? I know I’m not alone, though. A great many people have skin problems because, fairly obviously, we all have skin.

Only some people have malignant melanoma. Some people are stared at all day, every day because they have facial scarring. Some people experience potentially life-threatening rashes all over their body.

I have skin problems.

They have skin problems.

Our skin problems are not the same.

I don’t need medical treatment. Nobody’s videoing me on their phone because they think I’m such a freak. Those nasty craters are probably not lifelong and they will not, if left unaddressed, kill me quickly or slowly. To say “we all have skin problems” does not instil solidarity; it grossly downplays the level of impact on those with severe conditions. It minimises the risk, it minimises the implications and it minimises the suffering.

People at the really tough end of things almost certainly know what it’s like to have pimples, or the brown spots that come with ageing, or ragged cuticles. Yet I will probably never know how it feels to be at the severe end of the skin problem spectrum, and I would never pretend to. It’s not a two way street.

So let’s go back to mental health.

Yes, “we all have struggles/troubles/demons/distress” but just like with skin, some struggles are more overwhelming. A good number of mental health difficulties are transient, and many are mild. Some, such as bereavement, are part of the normal course of life – the pain is very real, but it is not necessarily pathological. Some people end up having time off work because their stress levels have built up to the point where they cannot carry on effectively, but often the situation can be resolved by changes in the workplace. Some people get very anxious about things they know don’t merit it but they are able to push on through and live their lives.

Yet some people don’t have custody of their children due to their mental health problems. Some lose close personal relationships or are never able to form them. Some people bankrupt themselves when unwell. Some people are never able to work. Some are detained against their will. Some people have permanent physical effects from self injury, malnutrition, suicide attempts. Some people live in terror because of unfounded fears that people are trying to catch and kill them. Some people are mentally or actively working on ways to kill themselves. Many people do die.

The vast majority of people will never know how it feels to live through that, and I am sincerely glad for them. But most people with severe mental health problems will know what it is like to experiences loss, to experience stress, to be overly anxious. They know the everyday struggles, the common struggles we all have to live through, and they know that they’re not the same.

Please do not tell me we all have troubles. Please do not tell me that the personal relationships I have lost, the overdoses I have taken, the end of two professional careers, the inability to parent my children full time, my endless cocktails of drugs with their endless parade of side effects, my hospitalisations, my community suicide watches are just a normal part of life. Please don’t. Not when I cry in front of Facebook looking at my normal friends having a normal life of little things I cannot have. That’s insulting and painful.

The idea that we’re all just on some grand human continuum doesn’t bridge a gap, it increases it. Being “all the same” feeds into the belief that those of us with severe mental illness are no different to those with the mild, transient kind – so then when we describe the severity of our troubles, what, are we just being divas? Oh you have bipolar? But everyone has their ups and downs, just some people can’t cope with it. Oh, you’ve been diagnosed with Borderline Personality Disorder? We can all feel a but moody at times, you just have to get a grip. We all feel we need to go on a diet in the summer. We all feel low now and then. We all have minds that play tricks on us. Of course we do.

And so it builds in an expectation that severe mental illness should be easy to fix because it’s not all that different to any other period of distress, really. “Well, with the support of Occupational Health and my line manager, I was back at work in five weeks.” “I had four sessions of CBT and was able to put my anxiety into perspective.” Were you? Were you? Good. I’m glad you have been able to put your troubles behind you and get on with life without 30 years of unsuccessful treatment. But that certainly feels like luxury from here.

Comparing open pores and malignant melanoma would, and should, be considered ridiculous and actually rather distasteful. So why should it be considered valid and meaningful to bundle up severe suffering and life-altering consequences with day to day “struggles”?  Failure to identify the often excruciating experience of serious and entrenched mental health problems is a whitewash.

Please don’t try to normalise severe suffering. It’s not just a part of life in general, it is a extraordinary experience that dominates many people’s lives and identities. I am like everyone else in so many ways – needs, desires, hopes, skin – but when I am ill I am more unlike the general population than I am like and I am acutely aware of that. Can we please stop pretending otherwise for the purpose of dismantling the medical model? Because you’re marginalising the voices of the people you purport to want to help.

 

Image: A mass of unidentifiable flamingos

(Source: Flickr, status: commercial use and modifications allowed, creator: angela n.)

Posted in Antipsychiatry, Anxiety, Bipolar, Depression, Hospital, Medication, Mental health, mental health debate, Mood disorder, Parenting, Psychiatry, psychology, Stigma and discrimination, Suicide, Uncategorized | Tagged , , , , , , , , ,

Who’s listening?

It’s no fun being trapped in a pit. You were walking along in the forest and you just kind of… slid. And now you’re on your own in the darkness, looking up at the moon through a circle of dirt.

You didn’t ask to get in. You can’t see any means of getting out. Nobody knows you’re in the pit. You will have to go on bearing it alone.

But then (oh, miracle!) somebody walks by. They lean over the edge of the pit. “Hey!” they call down, “hey, are you OK? You don’t look OK.”

Suddenly you’re embarrassed to have fallen into a pit – what sort of a ridiculous person would do that? – so you shout back, “Yeah, I’m OK! Thanks for asking!” and the person goes on their way.

You have that exchange a number of times but a sense of resentment grows. Why do these people get to walk about the forest without falling in a pit? Why are you ashamed of being in one? You didn’t dig the pit yourself.

One day a jogger in a charity vest stops by. “Hey!” they shout. “Are you all right? Because if you’re not, it’s OK to talk about it, you know!”

You hear this message a lot over the next few days. A man with a dog tells you to “reach out”. You assume he means verbally, because if your arms were long enough to haul yourself out of there you’d certainly have done so by now. A kid on a scooter tells you to find someone to talk to. A group of women inform you that they have supported each other through some dark times and that you could be supported too if only you shared your problems with somebody else.

So you make a monumental effort to transcend the shame and the fear and the apathy and the anxiety, and next time someone passes you yell up to them that you don’t think you are all right, that this pit is an awful place to be and you could use a little support. The person backs away from the edge. “Wow,” he says. “Wow that’s terrible. But I don’t think I’m the best person to talk to. I mean, I don’t know anything about this stuff.”

You keep on asking for help.

You are advised that you could make the darkness less awful if you lit a couple of candles, which might be good if you had any. You are advised that notwithstanding the length of your arms you could probably could climb out if you really tried. You are advised that you should be grateful because some people’s pits are worse than yours. Some of them have wooden spikes.

Wait, other people are in pits? Oh yeah, sure! About one in four of them. All over the forest. Are they all talking about it? Some of them aren’t, not yet, but we’ll keep on encouraging them.

The charity jogger swings by. “Don’t give up!” they urge. “It’s good to get it off your chest! Keep talking.”

One day something amazing happens. A well-dressed woman at the top of the pit actually seems to listen. “This is terrible,” she says. “I’m so, so sorry. I’ve been trained in listening to people who have fallen into pits and I’m going to get you some help.” Help! Someone will come with the right equipment and haul you up out of your hole. For the first time in ages you have a little hope.

The first person in the Rescue Team doesn’t look much look very hands-on; he’s in a suit, no hi vis in sight. It’s his job to do an assessment of your predicament, so he asks you a lot of questions about where you were going and what you were doing when you slid, and whether you have ever fallen into a pit before, and whether there is any family history of falling into pits.

It seems like he is really listening.

At the end of the conversation he explains that although he can see that you are in a pit, your pit is not so very deep compared to other people’s and that money for Pit Rescue is very tight. He will recommend that you should be given a very short ladder, but unfortunately the waiting list for even the shortest ladder is about three months. Three months! They want you to stay in a pit for three more months?

Unbelievably, a prince and a princess show up. She’s beautifully dressed and they’re both smiling. They lean down over the lip of the pit and remind you that when you talk about pits, conversations about pits in general get just a little bit easier for everyone. You think to yourself that maybe if everyone just didn’t live in palaces there might be more resources to go around for Pit Rescue, but obviously you don’t say anything.

Things take a turn for the worse. As winter approaches, the pit begins to fill, slowly but surely, with water. Now you starting yelling out at anyone and everyone that you think you are going to drown, demanding help. People start walk away, looking embarrassed because you seem hysterical, maybe even a little aggressive. But you’re supposed to keep on talking, right?

The Rescue Assessor turns up again. “OK,” he says, “so it looks like things have taken a turn for the worse. I’m going to make sure that a Rescue Support Worker brings a snorkel. It won’t stop the water going over over your nose and mouth, but it might just keep you breathing. Let’s hope it doesn’t come to that.”

Now you’re not yelling, but screaming. As the water brushes your bottom lip you start telling anyone and everyone that things are becoming unmanageable, that you fear that you will die in the pit, because that’s what you’re suppose to do, isn’t it, keep talking? The Rescue Support Worker makes a face. “I don’t think the risk is all that imminent.”

Just as you have to use the snorkel, the Rescue Assessor makes a site visit. “Oh, all right,” he says. “If you really, really can’t manage, even with equipment, we’ll divert some resources to haul you out of the pit. What you’ll need after that is a warm bed and dry clothes at a Rescue Centre.”

This sounds like heaven. You haven’t been warm in what, weeks, months?

“Only,” he goes on, “we don’t have one at our disposal. A lot of them got shut down – budgetary constraints, you know. The closest set of dry clothes we can find for you is in the next kingdom.”

You don’t want to travel to the next kingdom. You want to stay in your own forest with nice dry clothes, you just don’t want to be in a pit. You tell them that although you appreciate that this is a form of help, it is not the kind you wanted.

“Well, I’m not sure you have a choice. We think the risk is too great now. You say you don’t want to be in a pit, but how do we know you’re not going to fling yourself down the next one as soon as our backs are turned? We’re going to put you in the carriage anyway. We don’t have the time or money to watch everyone in the forest, you know.”

Your throat hurts where you have talked and yelled and screamed for help. But only the trees are listening.

 

Picture credit: target via Flickr

 

 

 

 

 

 

Posted in Crisis care, Depression, Hospital, Mental health, Mood disorder, NHS services, Psychiatry, Stigma and discrimination, Treatment planning, Uncategorized | Tagged , , , , , , , ,

Hurdles

I’m not sure what I am writing here, or why am writing here, other than because I feel awful. I just need to let it out, I suppose. In an ideal world I would have an on-going relationship with a therapist, but of course I don’t. So this is one of those posts that is simply me venting. Boring, right? Feel free not to read on.

I suppose the problem is that my life is boring – whilst at the same time, being way too exciting. What I often try to get across to others is that unpredictability is the very core of my disablement. I feel awful today, but tomorrow I could be all too great, stupidly great, recklessly great. Or I could feel worse. My fleeting suicidal thoughts could gain traction. I have no way of knowing. It’s boring because to minimise the chances of it being too exciting, I essentially have to do nothing of note.

We have essential renovations going on. There is packing, there are boxes. Familiar things are being put into storage. There are workmen. Tom and I are sanding and painting and cleaning up the mess. I want it all to be done – we need it all to be done – and I went into it knowing that it would be somewhat stressful, but I have been surprised at how wobbly it’s made me. I am disappointed by this. Like I have been trying to be a functional adult and fallen at the first major hurdle.

We have a short holiday coming up, which ought to be a lovely break from the house stuff. Yet instead of being excited, I am highly anxious. We’re not going anywhere long haul, we’re not going for many days, I’ll have Tom with me all the time, it’s somewhere I’ve been to before. But it’s not just a voyage abroad, it’s a voyage into the unknown in terms of my mental health. I have had some awful, awful times away, and some fantastic ones. I have zero idea how this one will go. I’ve made an appointment with my GP for the day before we go in order to ask for a small amount of diazepam (like many GPs, she’s not going to give me any more than that) in case it all goes badly. I can’t tell you how much I resent having to do this as part of my holiday prep.

With all this going on, it’s probably a really bad time to test out whether I am ready for work, but when you are self-employed you have to take opportunities when they come along; no one else is going to phase a return for you. I am so, so sick of testing out whether I am OK to return to work and being smacked round the face with a big slippery NO, but I really wanted to try again.

I had the chance to go to an event last week, kind of a project relaunch that was billed as a party. It seemed like a great time to try and get back involved, and a chance to reconnect with lovely colleagues who I hadn’t seen in 14 months. Plus – party! I assumed there would be cake. I was really looking forward to it, but then for the couple of preceding days I couldn’t stop crying. It became very clear that I did not have what was needed to get myself into London and be out all day, let alone connect with tens of people and take in a lot of information. It was the right decision not to go, but I felt bitter.

Yesterday I congratulated myself because I did manage to go into central London (it was a journey I had done many times, and I went outside rush hour) to see about perhaps joining a project at somewhere I have often worked. The idea was to slip in on this initiative, initially on a voluntary basis, to see whether I could work there as a freelancer under the Permitted Work rules (I’ve already been given permission to do this). The meeting lasted just an hour and half. At the end I was very tired and my brain was foggy, but overall I felt positive. For some reason the tube bothered me more on the way back, and I felt a bit panicky, but I made it home.

First I fell asleep on the sofa then I kind of generally fell apart. I felt increasingly negative about the holiday, which was frustrating for Tom, who’s planned it for us, and I think we both felt misunderstood. I went to bed on my own, feeling low. I woke up during the night even more times than usual (lurasidone still gives me insomnia) and lay awake with suicidal feelings, my mind returning to consideration of the old methods. I am so disappointed by that. I haven’t “been there” for a good six months or more.

Why can’t I just do stuff? Stuff that normal people take for granted – just the stuff of adulthood?  Why do I keep falling at hurdle after hurdle, even the little ones? I’m not expecting any answers, and I know that so many people reading this wonder exactly the same thing every day. I am far from alone.

Yes, this is how it is. This is my life. But it doesn’t mean I have to like it.

Posted in Anxiety, Depression, Medication, Mental health, Mood disorder, Rapid cycling, Self-management, Suicidal thought, Uncategorized | Tagged , , , , , , , , , ,

Why “crazy” is lazy

Paul Nuttall is a crazy, myth making liar.

Donald Trump has a troubled mental status, and we should feel free to used the terms “nut case” and “mentally ill”. Indeed, he probably has Narcissistic Personality Disorder.

The climax of Piers Morgan’s mental breakdown is imminent and should be sent to The Priory.

Not my words, but ones I have pulled from social media the morning.

I get where this is coming from. I really do. It’s so tempting to write off repeated bad behaviour as “mental illness”. Because why would a rational, sane person make self-evidently bizarre and authoritarian claims? Why would anyone repeatedly tell huge, discoverable whoppers unless something pathological was going on? Why would someone display their most unpleasant character traits on social media unless they were disinhibited by their mental state?

There’s a process of “othering” going on. People with mental health problems are usually “other” because they might think differently and/or behave differently to the norm. They might seem embarrassing, laughable, or even frightening and so it’s comforting to the general population to maintain a belief that those people are not like “us”.

But when the Trumps and the Nuttalls and the Morgans take centre stage, mental illness suddenly becomes the lesser of two evils. It is difficult to accept that awful behaviour could come from a place of being a not very nice person, that unpleasant and sometimes damaging ideas might simply be part of the human condition. Because what then does that say about the the rest of us “normals”?

Of course the kind of behaviour we see from Donald Trump goes beyond merely damaging and into downright dangerous, so the othering has to be stepped up. Personality disorders, perhaps the most stigmatised of mental health diagnoses, are especially useful here. They might lead to troubling behaviour, but some of them are also “evidence” of pathological awfulness. It’s a convenient way of seeing Trump’s behaviour as evidence that he is both unhinged and bad to the bone. Many people, including health care professionals who do not work in psychiatry, have been quick to remotely apply the diagnostic criteria for Narcissistic Personality Disorder and declare that Trump is a match, rubbing their hands with glee at being able to stick him in the “other” box.

Aside from the unethical nature of public armchair diagnosis, the association of dangerous/embarrassing behaviour and mental illness impacts on people who genuinely have a mental condition. Othering gets taken to a new public level, as the association between mental health and awful behaviour are further cemented in the public mind. If Donal Trump is “crazy” because his wild ideas can be downright dangerous, “crazy” people must have wild ideas and their thoughts might be dangerous – especially those people with more severe conditions.

Pulling The Priory (a well-know British privately-run mental health hospital) into the discussion downplays the seriousness of admission to a psych unit, and makes admission the logical consequence of bad behaviour. Both mad and bad people ought to be inpatients, tucked away out of sight. It is effectively a punishment which conveniently removes offending ideas from the public domain.

Here’s the news flash: some people are just plain obnoxious. They probably don’t have a personality disorder, and even if they did, nobody could be sure other than a qualified psychiatrist who’s spent sufficient time with that person to make an assessment. They’re probably acting as they are not because they are mentally unwell. Their behaviour isn’t the result of disinhibition or panic – it’s a choice. Their lying is situational and calculated, a deliberate means to an end, not the result of someone whose untruths are pathological or “crazy”.

A simple plea, then. By all means acknowledge that Trump is narcissistic, but don’t go ahead and pin a stigmatising label on him. Call Paul Nuttall out on his lies, but don’t frame his personal myth as mental ill health. Don’t identify repeatedly rude or unpalatable behaviour as evidence of an imminent breakdown, and don’t threaten admission as a way of dealing with bad (or mad) behaviour.

Just accept it: some people are repellent, and that’s probably all there is to it.

 

 

Posted in Activism, Hospital, Politics and current affairs, Psychiatry, Social media, Stigma and discrimination, Uncategorized | Tagged , , , , , , ,

Semantics

Warning: this post contains detailed descriptions of suicidal thoughts and feelings

Semantics

The branch of linguistics and logic concerned with meaning

1.1 The meaning of a word, phrase, or text:

  1. such quibbling over semantics may seem petty stuff’ (Oxford Dictionaries )

“I will always have an abnormal level of anxiety, but it isn’t all bad,” tweeted author Matt Haig a few days ago. “It keeps a mind sharp. Sometimes it feels like a superpower.”

There was an intake of online breath from anxiety sufferers. A superpower. A superpower?Yes – “those moments when you rise up, out of panic but massively alert, feel very empowering.”

Haig, who often appears mildly baffled by reactions to his views on mental health, offered clarification. “The main thing is: no two experiences of life or illness are the same. To me anxiety can sometimes tip upwards into an intense excitement.”

Of course he’s right that no two experiences of any illness can be the same. But I was among those wondering whether something that felt like a superpower, that was a kind of excitement, that had anything at all positive going for it, could match my personal understanding of anxiety. There was a flurry of tweets as people rushed to explain why the debilitating nature of their anxiety made the suggestion offensive, and a flurry of counter-tweets validating Haig’s right to describe his anxiety any way he likes. Now I’m left chewing on the question: when you say you have a condition, and I say I have that condition, how do we ever know that we are referring to the same thing?

Let’s take a look at the criteria for a diagnosis of depression:

Reduced pleasure in activities 🔹 Feeling down, depressed or hopeless 🔹 Trouble falling or staying asleep, or sleeping too much 🔹 Feeling tired or having little energy 🔹 A poor appetite or overeating 🔹 Feeling that you’re a failure or let yourself or your family down 🔹 Trouble concentrating on things like reading the paper or watching TV 🔹 Moving or speaking slowly, or being very fidgety, so that other people can notice 🔹 Thinking that you’d be better off dead or hurting yourself in some way

“But wait a minute!” people cry when I get to this point on training courses. “Sleeping too little and sleeping too much are both on there! Are you saying someone might have depression if they are eating too much or too little? If they are unusually fast or slow? How can two opposites lead to the same diagnosis?” Well…

Clinical criteria impact on how people with mental health problems describe their own symptoms. I’m bipolar, that’s my diagnosis, and it resonates. And that diagnosis means that I swing between two opposites, yes? So if one of the poles is elevated, high mood, then the other must be low mood. And low mood = depression. I mean, that’s what it must be, it says so in the manuals. Manic depression, (hypo)manic mood alternating with depressed mood. Right?

Except what if it isn’t? What my experience at the low pole isn’t depression as other people understand it?

I sometimes hear people speak of their depression and/or suicidality as an emptiness or numbness. I have no means of relating to this. It’s like we are speaking a different language. I have no reason to disbelieve them, yet when comparing their description with my own experience I hit a total block. I cannot imagine not feeling. It seems implausible. And if I did, I wouldn’t see that as depression.

Because depression, to me, means pain. Active, urgent pain, the kind of pain that must be stopped. Ultimately the only certain way to do this is by suicide, so even when the pain fades for a while the fear of it coming back means I never really rule out killing myself as an option.

Right now I am somewhat depressed. There is a hole in my soul and the cold is creeping slowly in. This edge of pain is bearable, but if it progresses to severe depression, it won’t be. That hole, somewhere around my solar plexus, will expand and I will find myself hunched cover, my body curving around the void until my spine aches. The muscles around my mouth will ache too from the twist of something beyond crying, something more like keening, forced out of me by the anguish.

By the time I get into crisis the emotional pain is such that I sometimes cannot stand. I promise I’m not making this up. I end up on the floor, or leaning over the kitchen counter, as if someone has just punched me in the stomach. The whole time my mind runs over the same refrain: I can’t stand this agony, I can’t live in such acute distress, please let me die, please don’t try to stop me, if you knew, if you knew how much pain I am in and you really loved me you would not try to stop me, you would give me the pills yourself, you would take me to a Belgian clinic, you would sit beside me and hold my hand and stroke my hair until I was finally released.

Is that what other people mean by depression? How can I know? If it’s not your depression, if there is a massive gulf between our experiences, then how much use is the word?

I am emphatically not saying that my depression is more important or of more value than the depression of someone who experiences an absence of feeling. Objectively, that sounds horrible, not being able to connect with any feelings at all. It sounds like it would be hard to feel like a human. And yet as I curl up on the floor in the corner by the door, I feel that I would happily ditch my humanity if I could trade my despair for numbness. I am sure that if I got my wish I would regret it in a heartbeat. But sometimes, just a little, I envy those who are cut off the from the feelings that I am unable to bear.

I suppose for medicine and public health there is the issue of outcomes. Intolerable numbness and intolerable pain may both in the end lead to attempted or completed suicide. They are both incapacitating, interfering with partnerships, friendships, work, ability to enjoy what life has to offer. But the focus on the observable tells us nothing about the inner experience. Stroke and dementia can both cause loss of speech, but we would not expect the internal worlds of the stroke survivor and the person with dementia to be the same.

Maybe we need a new vocabulary, although I’ve no idea how this would be achieved. Cultures that end up with numerous words for what we might perceive at the same thing do so through shared consensus about things that everyone can see. It’s just not feasible for largely subjective experiences.

Perhaps it’s more realistic to recognise and acknowledge that it’s not just the diagnoses attached to a person that may be problematic. The personal meaning that those with mental health problems bring may be radically misunderstood by professionals and indeed peers. Perhaps we need to move away from simply asking whether service users tick enough boxes to merit a diagnosis, to a focus on the quality of the experience. What does “down, depressed or hopeless” mean to that person? What does it feel like? If they struggle with the idea that they would be “better off dead” what emotional resonance, if any, does that idea have? In order to help helpers to understand, should we be offering a range of adjectives (including numb, empty, detached) to pick from, instead of a menu of recent thoughts and behaviours?

I have no idea how to answer my own questions, or indeed if any work is being done in this area. But if we don’t try to cut through limiting language and our personal assumptions, we may never really be in a position to connect.

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