BADD 2017- Six ways disablism makes it harder to live with chronic pain

Today is Blogging Againgst Disablism Day 2017. Please check out the main page to read other contributions or add yours to the archive.

[Content warning for abstract discussion of mental health stigma, skepticism about illness, pressure around exercise, drug addiction.]

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Last autumn, as has happened twice before in the twenty-one years since I got sick, my pain became suddenly and inexplicably worse. Since then, pain and pain management have become more dominant features of my day. Lately I've been thinking about the ways in which disablism makes life with chronic pain tougher than it needs to me.


1. Pain as suffering.

My love for Stephen, as well as my friends and family is the most fundamental fact about who I am. However, if I were to die in an especially strange or amusing way so to make headlines, news reports would not read, “The Goldfish loved her husband, friends and family.”

The would instead say, “Sources have said...” or “The Goldfish has been described as loving her husband, friends and family.”

This is because it's not something that strangers can know. I'm married, I know these various people and am related to that bunch, but for all anyone else knows I can't stand a single one of them.

Yet, in this hypothetical report about the fatal inflatable crocodile accident, I can guarantee that it would read, “The Goldfish suffered from chronic pain.” or “The Goldfish was a sufferer of chronic pain.”

This is something else a stranger cannot know. It's very unlikely that I would have enjoyed chronic pain, but suffering, and especially my identity as a sufferer, is a presumption.

I have chronic pain. I am in pain right now but I am not suffering. Sometimes I suffer, but this is not a fundamental part of who I am. I am not a sufferer.

I have become especially sensitive to this as pain has rendered the enjoyment of life a little more of a challenge. Several people, including myself, have been working very hard to ensure that I am not suffering most of the time. I just have pain. I am a person with chronic pain.


Of course, I am extremely fortunate (and I'm going to mention this a lot). Chronic pain can be a thousand different things and I am very lucky with the type I have; my pain is sometimes severe, but when I hear about other people's pain in different parts of their bodies, I always imagine I have things a bit easier.

Meanwhile, for many years, pain had a far more profound effect on my life because my circumstances were so much more difficult. This bad pain period has made me somewhat more isolated, but not as much as it once would have. It has not resulted in poor diet due to my inability to get food for myself. It does not make it harder to stay warm because I can afford to have the heating compensate for moving around less. It makes it harder to get clean and dressed, but I have help with that, various different ways of keeping clean and I am not going to be mocked if I look a little unkempt. I have even been offered carers to come in and help with getting dressed every day, but I don't really need or want that. As I pointed out to Social Services, I do have very nice pyjamas.

For a long time, I was in no position to manage my pain, received very little help and any deterioration of my health and mobility was met with an increase of anger and violence towards me from the person I lived with at the time.

All this is about circumstance, other people and culture rather than the pain itself, but it effected the way I framed my pain as a sort of punishment or my body's treachery. It helped me stay angry with my body and myself to some extent. There seemed no way of making things better.

As with all aspects of impairment, we experience pain in a context and there's always a danger of mistaking that context – almost always the product of our disablist culture – for the effects of pain itself.


2. Physical suffering as legitimacy

In the management of chronic pain (or indeed, any health condition), there are two strategies which will do us no good whatsoever. The first is to pretend it's just not happening. The second is to focus on exactly how bad it is, the way pain penetrates our thoughts, everything it stops us doing and how much worse it could be, how unliveable, if we were somehow forced to push harder.

Yet every year or two, the government sends me a form and asks me to do just that. Some of these forms are about my incapacity to perform full-time paid work. Pain contributes to this incapacity, but by far the biggest factors are fatigue and cognitive dysfunction. Often, I am simply not conscious for enough hours in a day to hold down a job.

The government are far more interested in my pain. Pain is physical, pain is suffering and pain is legitimate. The fact that pain prevents me walking or self-propelling a wheelchair more than a few metres is the reason I am found incapable of working. Someone with agoraphobia who might collapse, hyperventilating before they made it more than a few metres from their front door would not pass this test and they can't even hope to raise money for a piece of kit like a powerchair which might (partially) mitigate that limitation.

As the UK benefits system has become more ludicrous and cruel and disabled people have inevitably become more defensive, I see more people associating our political oppression with how much pain and suffering we experience. We're in agony - we shouldn't have to go through this! We're in agony - that's physical, that's suffering, that's legit!

We shouldn't go through what we do – the scrutiny and doubt, the trick questions, the sense of having to justify our existence. But nobody should go through this. Nobody should enter into any process under the working assumption that they are trying to commit fraud. There is nothing special about physical pain.

All games of legitimacy are disablist games which hurt other disabled people. But they can also effect our own relationship with pain and impairment. If we believe that any functional limitation we have – the inability to work, the need to use a wheelchair or any other kind of assistance – needs to be justified not just with difficulty but with suffering, it becomes extremely easy to start second-guessing ourselves. So we're in pain, but are we really in that much pain? Could we push ourselves a little harder? If we are enjoying life at all, does that mean we're not truly suffering and cannot ask for any accommodations?


3. Silence as stoicism

These days, I talk more about my pain than ever before. It's difficult and requires me to overcome significant programming. During years of domestic abuse, any mention of pain was met with an accusation of “milking it” but it's not just that. Our culture wants disabled people to suffer – and legitimises those who suffer in the right way – but it also wants us to do this suffering as quietly as possible. To be silent is to be stoic. Admiring voices often comment, especially after one of us has passed away, that “they never complained! They must have been having a terrible time, but they never said so!”

Which begs the question, did they actually have so very much to complain about? And if so, why celebrate the fact that a person was in so much distress and yet felt unable to talk about it with anyone? That sounds like a  really sad situation, not an admirable quality.

The pressure to stay quiet comes from the Tragedy or Charity Model of Disability. This is about showing courage or stoicism as a way of fighting against our supposed tragedy. A silent battle is particularly appealing to the dominant culture because it allows others to project whatever they need onto our story. They can have us suffering dreadfully, to be living symbols of their compassion towards those less fortunate than themselves, when of course our lives are more complicated than that. They can have us not wanting to cause a fuss, when perhaps really we're silenced by the fear of being seen to cause a fuss.

True stoicism is, of course, about making the best of what you've got, focusing on the positive and putting the negative in perspective. Seneca, granddaddy of Stoicism, advocated thinking through the very worst things that could happen to us, partly so we realise they're not all that bad (depends on your imagination), partly so we can prepare ourselves for disaster rather than hopelessly worrying about it, and  partly so we can appreciate it when these things do not transpire. Fingers crossed!

True stoicism is not about gritting one's teeth and denying reality – on the contrary – but too often we describe a person as “stoic” when we mean “they've got it bad, but they don't complain”. And as well as silencing us, this can impair our access to effective pain management. I've heard folk being described as stoic when they won't visit the doctor, when they take risks with injuries, when they refuse disability paraphernalia. Or indeed, when they refuse to take the drugs they might benefit from.


4.  Drugs and judgement.

Thing is, some people take drugs that do them more harm than good, or are a waste of time and money. Some doctors prescribe drugs because they feel that's what patients want and it's much cheaper and less bothersome than other options. People – especially older disabled people – can end up getting prescription drugs on repeat for years without proper review. People are on drugs for conditions which could be greatly improved with things like psychotherapy, physiotherapy or nutritional therapy. And of course drug companies are all about making money.

But none of this means that we get to pass judgement on a jam-packed dosset-box.

The fact not every drug prescribed may be the best solution to that particular problem is the price we pay for the vast majority of drugs which either save or transform lives. The fact almost all drugs have side effects and increase long-term risks of medical complications is the price individuals pay for staying alive or having a much more manageable life, even if it turns out to be a little shorter. The fact that non-drug therapies are massively underused in medicine doesn't mean that these are things people should be (or even could be) engaging with instead. These decisions are personal and often medically complex.

There's a stigma attached to pain medication. There are folk who refuse to take an aspirin when they have a headache and imagine that whatever noble principle they're exercising can and should be extended to others with different sorts of pain (which is anyone who doesn't have the exact same headache). I'm going to talk about opioids in a minute. However, by far the most stigmatised drugs are anti-depressants.

A counter-meme: "If you can't make your
own neurotransmitters, store-bought is fine"

I still see memes picturing a pile of multicoloured pills, contrasted with a beautiful scene of nature, stating that the former is garbage or poison or similar and the latter is a cure for depression. And again, it's not as if spending time outside in nature has not shown to be beneficial for people's mental health. Ditto meditation, spending time with animals or children, exercise, gardening, art and crafts, team sports, volunteering in projects that directly help other people and so forth. A more comprehensive health system would be able to point people with all kinds of chronic ill health, plus those at risk of future problems, towards some of these activities and it would reduce the number of drugs prescribed (although, of course, it would hardly cut costs).

Even if all non-drug therapies and activities were made more accessible and affordable, people would still need drug treatments. It would be much better if we lived in a world where these drugs were more often only part of a treatment that involved all kinds of other therapeutic goodies.

Apart from the should-be obvious facts that these pills and injections save our lives and make our lives more bearable, drug stigma and the idea that we should be doing other things, adds unnecessary pressure to people with chronic conditions.

Almost anything disabled people do is often framed by others as “therapeutic” which is irritating enough (maybe even more so for disabled people who are in perfect health). Bring in this idea that nature walks or art classes could eliminate our need for the drugs we depend on and it becomes harder to access all manner of activities without feeling that we need to be looking for some kind of significant healt outcome.

"Take the stairs!"

Exercise is probably the worst example of this. Exercise is very hard for a lot of people and downright scary for some – people with chronic pain are not alone in feeling some horror at the prospect of having to spend time focused on our bodies, the way they work and the way they feel.  People with mobility impairments are forever ignored in calls to Take the stairs! or even Take the train! given the poor state of accessibility on public transport. In our culture, exercise is often presented as highly goal-oriented (usually around size), and is often proposed as cure-all/ punishment; Get your arse down the gym! we are commanded on the grounds of any one of many diagnoses associated with poor mobility.

I exercise every day in such a way many people might fail to recognise as exercise. Even so, it takes a lot to overcome the sense that I should be building myself up to something, looking to increase what I can do, trying to lose weight (which, with the exercise I do, would take a very very long time) or indeed trying to reduce the drugs I'm taking. Sometimes my exercise might contribute to being able to drop a dose of one thing or another, but if I made that the point of exercise, I would meet with disappointment almost every day.



5. The high melodrama of opioid painkillers

In September, morphine moved from being a bad day drug to an everyday drug. Unlike all my other meds – including almost twenty years of different opioids - morphine is something people have heard of, it's something people associate with acute pain, but also abuse and addiction. It's a drug that comes up in song lyrics from time to time. Nobody ever sings about Movacol.

I was reluctant to take morphine at all and once I was taking it regularly, I was nervous that my GP might be alarmed at how much I was taking. Friends and family have expressed particular concern about it, as if being on morphine makes my pain a serious matter (like it wasn't before?).

More than once, my GP has assured me that I'm not that type of patient (the type whose drug use would concern her) and I realise that – as well as my GP being generally awesome - there's probably a large degree of privilege in coming across as sensible, responsible and self-aware enough to know if I was running into trouble.

I'm also very conscious of my good fortune living in a wealthier part of the world, where seeing a doctor is free. My prescriptions have always either been completely free (they are currently) or have cost around £100 a year on a pre-paid card. I have never had to make decisions about drugs as a consumer. Nobody has ever tried to advertise prescription drugs to me.

I'm aware that for friends in the US, anxiety over opioid addiction is making it very much more difficult for people to access appropriate pain control. As I understand it, a huge part of the problem there is around money; a minority of chronic pain patients sell prescription drugs on because being sick there is extraordinarily expensive. Some patients move onto heroin (entirely unregulated and unmonitored) because it is cheaper than getting a prescription. When both doctors and their prescriptions are expensive and patients are mistrusted, folks are forced to self-medicate. And if you can't afford regular daily painkillers – by far the best regime of managing chronic pain - it would be tempting to splash out on the occasional pain-free night when the cash is available. In such circumstances, even drugs of established provenance become extremely dangerous.

The US saw 50,000 opioid-related poisoning deaths in 2015. The US population is only five times bigger than the UK, yet all our poisoning deaths, involving every kind of drug or substance, totaled under 3700.

The danger of a drug – any drug - is highly contextual. Morphine is almost certainly less addictive than alcohol and yet we still cling onto the (disputed) idea that a glass of wine every day might be good for you.  There's also a huge difference between chemical and psychological addiction. I am  chemically addicted to dihydrocodeine, another opioid – its sustained release, so there's no buzz to be had, I just get really sick if I miss a dose. However, if I didn't need it any more, I would cut down in increments and suffer minimally. People do that all the time. Many people take strong opioids after injury or surgery for a few weeks or months, but others come off these drugs after a period of years; my Granny has weaned herself from morphine twice in the last decade. My father-in-law went practically cold turkey from morphine following an operation to fix his back.

Psychological addiction is an illness in its own right. It doesn't start with a drug so much as the problems a person has which the drug (or gambling, shopping or any other compelling behaviour) allows some temporary escape from. Drugs, their effects and the cost of acquisition then play a role, escalating a significant problem to a cataclysmic problem as money, work, health and relationships fall under. Sudden withdrawal from opioids is horrible, and with emotional distress in the mix I have great sympathy for folk who feel utterly desperate.

Having chronic pain doesn't magically protect a person from emotional pain or psychological addiction stemming from it. But this risk is not mitigated by suspicion and restriction of essential pain meds. The thing that makes my drug use particularly safe is my trust relationship with my doctors; I trust them and I feel trusted. If something did go wrong, I would be in the best possible position for getting appropriate help. I know way too many people who are not so fortunate.



6. The physical/ psychological false dichotomy

Yawn! (A yawning alpaca)

Most of us can deceive our brains at least a little bit about what's going on in our bodies. I think I'm more suggestible than most. I have this problem with empathy whereby I violently flinch and sometimes cry out when I witness realistic injuries on TV and in movies. If I watch or read something set in a cold climate, I start shivering and if conversation should turn to the subject of fleas, headlice or similar, I'm going to have to sit on my hands. Oddly enough, I do not catch yawning off other people despite living with fatigue. I think my yawn mechanism is broken, but I still have the power to make others yawn by talking or writing about it. Open wide!

All this stuff doesn't mean that hunger, extremes of hot and cold, fatigue, itchiness, pain and the rest is all in our imagination, or that feeling any of these discomforts, we can trick our brains into imagining our bodies are comfortable. Discomfort indicates a problem, and evolution has rendered us incapable of ignoring it altogether. But psychology is a really useful tool in chronic pain management. Anything which can help distract from the pain, make the pain less frightening, less mysterious, or feel less like a punishment or a betrayal will make pain less painful and make us more capable of looking after ourselves.

Unfortunately, many people with chronic pain have very good reasons to feel terrifically defensive about psychological influences on pain. The gentle tool of psychology has been broken in two, with one end carved into a very sharp point and nails hammered into the other.

Most pain has a physical origin. It is possible for emotional distress to manifest in physical pain and of course, emotional distress often triggers bodily events (raised blood pressure in the head, muscle tension in the neck, reduced blood flow to the digestive system etc.) which can result in or contribute to pain. However, psychosomatic pain occurs only in people in considerable emotional distress and even when they know that's the nature of their pain, it cannot be reasoned away.

Unfortunately, we live in a culture which persists with this dichtomy between ill health or injury which is physical, real and therefore legitimate and health problems which are psychological, imaginary and therefore basically non-existent. These ideas are not restricted to the pub loud-mouth; this dichotomy is highly profitable. Insurance companies, government agencies and the companies they employ are heavily invested in a bastardised biopsychosocial model
of all impairment which uses mental health stigma to allow discrimination against as many disabled people as they can possibly cast some doubt upon.

Many friends with chronic pain and other physically-manifesting symptoms have had doctors struggle to find a physical cause, only to hold up their hands and say, “Well, it must be all in your head, nothing I can do. Just go away, get over it and get on with your life.”

Gratefully, this stuff is much less common these days – I get the impression the generation of doctors who just couldn't cope with someone whose condition was not easily identified and swiftly cured are fast fading away. But what these folk experienced wasn't misdiagnosis – it was dismissal. They were rarely sent to any kind of mental health professional, despite their dramatic and (in psychiatric terms) atypical symptoms.

What happens more often today is a little more subtle. My father-in-law was sent to a back pain support group before he had even received a diagnosis for his by-then chronic problem. This was – as was agreed among everyone present, some of whom were unable to stand up straight or walk – a holding pattern, a humiliatingly pointless exercise to slow down the flow of traffic to the various clinics these people needed to attend. Some folk would almost certainly drop out at this point – their condition might improve on its own or they might spend the rest of their life in unnecessary mysterious pain – but at least that would be a few off the waiting lists.

The idea of an NHS-run chronic pain support group is great, but not before an attempt at diagnosis. I know others who have been sent to similar NHS-run support groups at the wrong time, when they've been seeking some other kind of help, and instead of thinking “Well, this group will help me gain knowledge and get perspective about my pain condition,” they have, quite reasonably, felt fobbed off, as if they were being asked to simply think positive thoughts to wish their pain away.

Even though we don't always understand what is happening to us, we are experts in our own experience. To feel doubted or dismissed about such a profound experience as chronic pain is deeply traumatic. And if you begin to doubt your own chronic pain, therein lies a whole world of trouble; it is very much more difficult to look after your physical health, to not push yourself too hard, to medicate or sooth your body when things are bad. But most of all, of course, if you are conjuring up this kind of pain while feeling otherwise okay, what does that say about you? If you think you are in reasonable mental health, but are in fact in so much distress you are manifesting pain, how can you trust anything you think or feel?

So when folk are defensive about the purely physical nature of their pain, this isn't pride, stubbornness or scientific ignorance – this stuff is borne out of trauma.

And yet as I said before, all games of legitimacy are disablist games. The more we play into the idea of this fixed physical/ psychological binary, the more mental health stigma can be used to hurt everyone living with chronic subjective symptoms.

This stuff also promotes a culture which makes it difficult for people with pain conditions to recognise and seek help for mental ill health, as well as denying us potential avenues of pain management. We need to be able to discover that fussing a dog, painting our nails or watching the falling blossom eases our pain without any sense that this throws the reality of our experience into doubt.



Image descriptions and credits:

The first image is the black and white Blogging Against Disablism Day logo. A banner across the top reads "Blogging Against Disablism" below which is a 5 x 4 grid. In each square is a stick person. The twenty stick people include one wheelchair-using stick person and one stick-person using a tool which might be interpreted as a white cane or walking cane.

The second image is a cartoon pill pot containing green and white capsules which also appear to be tiny kittens. A label on the pot reads "If you can't make your won neurotransmitters, store-bought is fine."

This image is entilted "Purrozac", is the work of Megan Fabbri and was originally found on her tumblr. Apparently you can buy items of  apparel and accessories with this image on via Redbubble


The third image is a photograph of a bright green sign with white writing on the mesh wall of what might be carpark. The sign features a stick person ascending the stairs above which reads "Burn calories, not electricity. Underheath the illustration it reads, "Take the stairs!" and in much smaller writing, "Walking up the stairs just two minutes a day helps prevent weight gain. It also helps the environment."

This photograph was taken by Ludovic Bertron, was found on Wikimedia and is used under a Creative Commons license.

The forth image is a photograph portrait of a creamy-coloured alpaca, who is yawning and showing its impressive teeth. The background is rather blurred but suggests a field on a sunny day.

This photoraph was taking by Rob Faulkner, was found on Flickr and is used under a Creative Commons license.

On Loss & Chronic Illness - Sadness

Content Note: Discussion of depression, mention of suicidal thoughts.
Mr Goldfish has provided audio for this post:


My general plan in writing these blog posts was that I would conclude with Acceptance on 26th August, the 20th anniversary of my becoming ill. I suppose it is fitting that the last several months have been pretty rough and things didn't go according to plan. 

The forth stage in the Kubler-Ross model of grief is usually described as depression, but I'm going to talk about sadness. Depression and extreme sadness are different but despite many attempts to draw one, there's no magical dividing line between the two. Both can cause physical pain and profound exhaustion, both can damage one's physical health, quite apart from the ways they effect behaviour. Either one can lead into the other.

However, in general:

• Depression may feature a great mix of negative emotions including extreme sadness but also raging anger, prolonged anxiety, panic or profound numbness. Extreme sadness is more often mixed with more positive emotions, like nostalgia, gratitude and love - sadness can be bittersweet, depression not so much.

• Depressive reasoning tends to lead to more extreme, pessimistic and strongly-held conclusions. A non-depressed sad person may feel despair that life has irrevocably changed, and wonder how on Earth they will be able to cope. A depressed person may feel certain that life is and will remain unbearable and they will not be able to cope.

• Depression is more likely to be unrelenting. A common experience when someone first realises they're depressed is that they're in a situation where they would usually expect to feel much better - in the company of good friends, doing something they love etc., and they still feel completely flat or on the verge of tears. Sad people inevitably feel out of place in situations where others are happy and celebrating, but it may be more possible to temporarily lift one's spirits. In the same way, a sad person may feel that others understand and support them, while a depressed person may feel very extremely alone - feeling either like a burden to their loved ones, or suspicious that others don't truly know or like them.

Although it is impossible to draw a neat line, it is important to consider the differences; sadness can be horrible but depression can be dangerous. Because the lives of people with chronic illness - whether physical, mental or a bit of both - are often difficult, it is easy for both us and other people to mistake depressive symptoms as a normal response to our primary condition or even part of that illness. A bit of a tangent, but an important point.

The Kubler-Ross model is an imperfect model of what happens to everyone coming to terms with loss. Some people skip stages, or experience these stages in a different order and of course, some losses, like those experienced during chronic illness, are ongoing - we sometimes return to stages of denial, anger or bargaining when the loss deepens or we're somehow reminded of loss we thought we'd gotten over.

Sadness is the black hole that the psyche holds out against if at all possible. Whether consciously or not, we tend to go to considerable lengths to avoid the sadness. Unlike the stages before it, sadness gives you nothing to do; denial, anger and bargaining each push a person towards some kind of strategy, whether carrying on as if nothing has happened, raging against the situation or negotiating a reprieve. Sadness acknowledges the finality of loss - even if an illness might improve, there's a certain kind of life which will never now be lived. Sadness is hopelessness and helplessness and as I've mentioned before, the mind will perform all kinds of scary tricks rather that to consider itself helpless. To return briefly to my tangent about depression, I have experienced depression on two occasions and to be honest, neither of these were very heavy on sadness; I was scared and angry (mostly at myself). I was scared of feeling the sadness I could see coming and that fear made me want to die.

However, eventually, sadness is an almost inevitable feature of loss. It is deeply unpleasant, of course, but it is natural and often necessary. While we live in a culture which will, at least sometimes, tell you that anger is useful (and it sometimes is), it is rare to hear that sadness is sometimes absolutely vital in order to cope with loss. We expect people to be sad, of course, but we expect that to happen in an orderly culturally-appropriate manner - bereaved people can find themselves subject to disapproval for grieving either too long or not long enough (or, as is perhaps most common, fluctuating in their grief over time).

Meanwhile, the saying goes that you don't know what you've lost 'til it's gone - that's never been my experience. My experience is that you don't necessarily know what you've got until you acknowledge what other things are gone - that other possibilities that have fallen away. For me, sadness has been the great stock-taking; it shows you both what you've lost and everything you have left.

Whenever I have lost loved ones, I am reminded of how generally very lucky I've been with the people in my life, how lucky I am with those still living, and all the gifts my loved ones give me. Every time I grieve for my health – or the slightly better health I was enjoying a short while ago – I become only more acutely aware of the people and things that make life pleasurable even when I'm stuck in bed all day and asleep for most of it.

This was not always the case, because for many years, I tried to avoid this sadness. If I ever cried about my health, I would cry in fear and guilt; I blamed myself and felt that if things carried on in this direction, I wouldn't be able cope and I would be an even greater burden on the rest of the world. Part of this was because I believed I was useless and worse health always meant a greater degree of uselessness. In my first marriage, my worst health meant an escalation of abuse. But part of this was because I never allowed myself to actually think about what I had lost within that panicked grappling around for answers.

I've been especially conscious of this during the last several months when I have been having a long crappy patch. I'm having to give up my editing work at The F Word. I've achieved very little work of any kind. Small fun projects and social engagements have fallen away. A painless complication caused a bit of a cancer scare - only a bit of one, I was fairly sure I didn't have cancer – which took a lot of energy to get checked out and put me in something of a morbid state of mind for a few days here and there. I got sad.

However, when September arrived and I began to think about the autumn, I was looking forward to the months ahead. And to be honest, for most of the time I've been ill, I would have been in a complete panic. I would be thinking about the theatre tickets I have for the middle of October* and despairing that I might not be able to go, and it will be a huge waste of money and a grave disappointment to myself and other people. I would probably, even this early, start to worry about Christmas – whether I could be better by then, or whether my ill health would mess things up for other people. I would be panicking about the last four months of the year and how little I had achieved this year so far, and how another year would pass without meeting X, Y or Z objective.

And of course my life is much better now than it has ever been, so there are lots of reasons why I can entertain the idea that I may spend a big chunk of the next few months in bed without feeling desperate. But part of it is that I let myself get sad. I never used to do that. I have let myself cry over things I have had to give up. I have let myself cry over the uncertainty. Then I've thought about those things in my life more reliable than my health and felt extremely grateful.

This is not a “So really bad things are good things in disguise” argument; there are obvious tangible ways my life would improve if my health did (and if nobody I cared about ever suffered or died – is this so much to ask?). All I'm saying is that the things that help us cope with sadness are not present until that sadness is felt. I have perhaps been lucky in my life not to be struck with any spectacular tragedy, but in my experience, fear and guilt are a lot more difficult to negotiate than sadness.

I'm getting repetitive with sentiments along the lines of "our culture is pretty messed up about this emotion" - and of course, in a way, this is inevitable. Simplifying the breadth of human experience into particular and thus limiting narratives is kind of what culture does.

Modern philosophies are particularly bad with sadness. There's a whole world of books and seminars dedicated to positive thinking which involves eliminating negative thoughts - or even a bodged-up version of Buddhism which places the responsibility for all unhappy feelings at the feet of those who feel them. Even some versions of Christianity - historically sometimes too accepting of sadness and suffering - now demand that followers face every negative event with a smile because it's all God's plan and those who lament their experiences somehow lack faith.

Disabled people find ourselves in a double bind with this sort of thing. We are expected to be sad people, perhaps especially people with chronic illness who have lost a non-disabled life and who have debilitating and sometimes demoralising symptoms. Many disabled people actively resist that; to be sad is to give in to the problem – to give in to the stereotype. Many many disabled people are encouraged instead to stay in earlier stages of the grieving process; to stay in denial and pretend that things will improve at any moment, to dedicate one's time and energy to regimes and therapies which promise to bring about recovery, to not “give up”, to get angry and stay angry in order to “battle” illness. In other words, we are pressured to live up to another stereotype.

Stigma is also a problem. Some people with physical chronic illness who've been through dismissal and misdiagnosis live in fear of being perceived as even slightly depressed. And many politicised disabled people don't want to be seen as being sad about things they know to be morally neutral facts of their experience - facts for which are automatically met with pity and unwanted sympathy from strangers. It can feel like being sad – or certainly expressing sadness - about our impairments is somehow letting the side down.

On the other hand, sadness is often portrayed as a romantic or heroic characteristic, something which leads a brooding genius to stare out the window, a single tear staining his cheek. We're pretty uncomfortable about depression as a chronic messy illness, but there is a significant element of our culture which regards sad people as deeper thinkers, more sensitive and empathetic - so long as we don't see them crying in public or wandering the streets in dirty clothes.

And often, people with some kinds of chronic illness feel obliged to, to some extent, perform their role as an unfortunate ill person. Not necessarily for sympathy (although perhaps sometimes, for a good cause – you never see anyone raising Awareness in newspapers and magazines with a smile on their face). But more often, I think this performance is simply for peace – fed up of hearing that they don't look or seem sick, or of newspaper stories about benefit fraud whose headlines amount to Disabled person seen having a good time, there's a temptation to show the world that you're suffering.

I know some people are really afraid of their lives looking too good; too comfortable, too happy. And this is also about our unequal society in a more general way; marginalised people of all stripes who seem to be having a good life are those who most offend bigots – as Chimamanda Ngozi Adichie says, "There are people who dislike you because you do not dislike yourself.”

Happy disabled people are, after all, the least deserving of pity and for some people, our only purpose is as objects of pity to make non-disabled folk feel good about themselves. Unhappy disabled people are far less provocative (at least if their unhappiness is relatively quiet and passive).

All this risks undermining authentic psychological reactions to the losses we experience through chronic illness. We are stuck between a tragic rock and a plucky hard place.

It's not that we shouldn't feel sad (or angry, grateful, defiant, whatever) – but that we should give ourselves emotional space to feel whatever we happen to feel. We should reject both tragedy and the triumph over it as personal narratives.

Because I feel sadness is largely something we must ride out rather than something we need to work through, here are some tips for managing sadness - not for curing it, or moving on from it, but managing sadness rather as you might care for a physical wound:

Attend to your physical comfort.

Make sure your diet is as pleasant and nutritious as possible, that you are keeping warm (or adequately cool during those few days of the year when it's a bit too hot), are wearing attractive comfortable clothes and are spending your time in as comfortable a position as you can manage. If possible, work out some appropriate physical exercise and keep to it. When possible, get a little sunshine and fresh air. Don't fight the temptation to sleep unless you have a good reason to. If you have one available, have an attractive person rub lotion into your back.

It's really amazing how much physical comfort effects mood; I remember my mood once transforming after I changed my socks when one had a hole in it - I hadn't really noticed the hole, but the world seemed considerably more bearable in its absence (if you donate items to homeless people or refugees, priorities good strong socks).

Do not try to avoid negative thoughts or universal sadness triggers.

You can't avoid negative thoughts. You can promote positive ones. You can talk about your negative thoughts and get a better perspective on them. Just writing down your negative thoughts can help you begin to sort them out. However, even when negative thoughts are irrational and unhelpful (which, you know, they aren't always), they can't simply be willed away, or drowned out with loud cheerful music.

Folk sensibly attempt to control their exposure to material which upsets them, but this is only possible for fairly specific material - like avoiding graphic depictions of a particular kind of violence or checking whether thedog dies. Trying to avoid things – thoughts, stories, conversations, news etc. - which are sad is not only a futile and miserable exercise, but also a recipe for anxiety. Even if you're not feeling sad or reading about something sad, something may come up at any moment to change that. So you're left feeling on guard and unable to fully engage in anything new or potentially interesting.

I find it helpful to consider passive activity like the music playlists I put together. A good all-round playlist has a combination of fast and slow tracks, upbeat and sadder songs. If you're reading, watching TV or whatever, then sad content will come up even in comedies and children's shows (especially children's movies - goodness me!), and that's okay so long as it's part of a mix. Material which is interesting, where you're learning stuff, or which allows you to have a conversation with other people (now or later) is also very good.

Express your sadness.

When someone you love died last month or even five years ago today, it is entirely socially acceptable (if not always easy) to talk about your sadness. With chronic illness, when sadness effects us can be fairly random – or at least random to other people who don't see whatever events have triggered the spell. However, I strongly recommend trying to tell someone, just so this thing can be heard and acknowledged. Failing talking to a friend, write about it, compose a song, draw a sad picture to get it down in some form. It is when sadness is not expressed that it is most likely to fester and mutate into something else; something bigger and messier. Not just a fresh depression, which is a risk, but also common or garden bitterness and resentment.

Look forward to small events which will happen.

It's probably an instinctive habit for people with chronic illness to look forward to the next meal, the next episode of a television programme or the next chapter of a book, but it is sometimes necessary to do this consciously. When you feel sad about the way your life is, it can feel pathetic to get excited about the small stuff, but the small stuff really is amazing. We live in an amazing world. That's not a reason not to be sad - terrible things happen in this amazing world of ours - but it is a reason to value all the joy we have available to us today. The sun will rise in the morning and the flowers will bloom in the spring. If possible, plant some bulbs.

Keep a record of your gratitude and pride.

This is hard but helps me a lot when I'm struggling at all. Get a notebook or allocate a text file and towards the end of each day, write down something you're grateful for and something you're proud of. It doesn't have to be anything amazing - you might be grateful for having a nice warm pair of socks and proud that you wrote out a birthday card. If you have more things to feel grateful for or proud of, write them all down. This does not cure sadness or any other negative emotion, but it allows you to focus, regularly, on good things you have in your life and good things you have in yourself.

* At the point of publishing, having pretty much resigned myself to abandoning the theatre trip, it looks like it might actually happen. Hooray! 

On Loss & Chronic Illness - Bargaining

Content Note: Refers to domestic abuse, disablist abuse, some mild swearing.
I decided to provide audio for this in order to avoid the irony of post which is so long it might be inaccessible to some people who might benefit from it:

In the face of loss, folk clutch at straws for something that will make everything okay, make deals with their gods, plead with their departing lover and so forth. Even after someone has died - especially if it's happened suddenly - their loved ones may run through a whole heap of scenarios where, if only one tiny detail had changed, if only they had personally picked up the phone or paid a random visit, the death could have been avoided. It's all too late, but the mind continues to try and negotiate an alternative deal.

I said in my post about denial that our disablist culture helps to keep people with chronic illness stuck along the process of coming to terms with loss, and this is especially the case with denial and bargaining.

We are encouraged to bargain for our health in the same way we're encouraged to keep an unflinching faith in the unlikely prospect of fast and full recovery. With chronic illness, it's difficult to engage even with conventional medicine without psychologically bargaining; believing that if you do the right thing, eat the right thing, take the right meds etc., then you will minimise what you've lost.

But this is chronic illness - by definition, conditions which can't be cured and don't usually go away by themselves (and if they do, they take ages). These illnesses tend to fluctuate and both relapse and remission can arrive either at random or due to events we have no control over, such as trauma, viruses or family stress.

Taking care of our health should never be about minimising a loss - that's simply not up to us - but rather maximising our chances of being as well, comfortable and happy as possible. When we feel like it. If we overdo it today, we're not breaking some cosmic deal; we don't deserve to feel like crap for the next week because we don't deserve any of it.

And that's something which is sometimes very hard to remember.

A significant part of what we lose when we become chronically ill is about identity and one of the worst psychological - and sometimes spiritual - effects of chronic illness is that it gets harder to believe that you are a good person.

Everyone wants to feel like they're a good person and most people find at least some sense of this in the things they do for others. Even if they don't spend their day saving small animals or lifting children out of poverty, many people's work is useful and helpful to someone else – people who genuinely feel their work is pointless have a problem. Then there are the roles we have within family, within friendships and communities; people feel good about looking after one another.

Whatever our level of capacity, people with chronic illness can do somewhat less than we'd like. Some of us can't do very much at all. The best intentions in the world can't give an elderly neighbour a lift to the hospital, babysit for an afternoon or simply show up and be with a friend whose world is crashing round their ears. Lower incomes limit our ability to throw money at other people's problems or give money to good causes. A low income plus low energy even limits our ability to make ethical or environmental choices as consumers; we can't necessarily afford to turn down the thermostat, buy Fair Trade undies or self-righteously abstain from seasonable sales when the things we need become briefly affordable.

Then there's the fact that what our culture holds up as especially virtuous is even more inaccessible than the quiet good of doing the best for the people and causes that matter to us. Ordinary people are always happy to put their hand in their pocket for a good cause, but to be seen to be good, you can't just ask around your kith and kin; you have to spend time, money and energy climbing mountains dressed as Spongebob Squarepants to raise just as much as you might have done rattling a tin*.

Beyond our diminished ability to do good and especially to be seen to do good, experience within a disablist society then gives us a hundred other reasons we can't be good people. Friends and family members quietly shuffle out of our lives, some employers behave absolutely hatefully, people make jibes or well-meaning but tactless comments and both professional and social invitations dry up.

In fiction, folks with chronic illness are at best innocent victims, abused, cheated on, heading off to Switzerland, the sweet but inconvenient relative who hampers a protagonist's journey. Otherwise we are serial killers or embittered tyrants, trying to control the world from a position of weakness and deformity; our illnesses are metaphorical and often fake.

And then we get onto politics. Campaigns against welfare and social care cuts are partly about money, but if you listen carefully, what you hear more than anything else, are protests of innocence. In order for what's been happening to us to be in any way fair and just, we'd have to be a complete bunch of bastards. I can say that casually, but it's very difficult not to internalise at least some of the crap we hear from politicians and in the media and in the wording of the letters and assessments.

So while there might be something natural about being less able to do stuff, needing greater support from others and thus struggling with feelings of inadequacy, this is a feeling enforced over and over again by capitalist disablist society.

Thus even after we've largely come to terms with ill health, I think a lot of us are still busy bargaining for our souls.

Of course, something people with chronic illness are pretty good at is suffering. Our culture frequently confuses suffering for real virtues like hard-work and patience - so much so that should one of us ever express the fear that they are not a good person, we may well be informed that, of course we're good - we've been through so much!

Suffering is not entirely unrelated to virtue. Some Catholics with chronic illness talk of offering up their suffering - they endure the pain and misery of illness so that they or dead loved ones won't have to spend so long in purgatory. It's not unreasonable to judge people favourably who have endured suffering without becoming embittered or angry with the world. Nelson Mandela was not a hero because he was imprisoned for 27 years, but the fact he wasn't overflowing with hatred towards the folks who put him there is an aspect of his heroic story (although perhaps an overplayed aspect among those who like to see heroes of anti-racism as supernaturally patient and peace-loving).

The goodness of those who suffer is about resistance; not giving into temptation, not being an arsehole about it, maintaining compassion for others and so on. But suffering itself doesn't make us good. Avoidable suffering is a complete waste of time and energy.

In my twenties, I used to think that a certain zealousness about ethical and environmental consumerism was fairly normal to my generation – not universal, but common. Then I noticed that even though we'd all grown up with a knowledge of climate change, animal welfare and workers rights, this preoccupation was unique to those friends with chronic illness. It wasn't like the others didn't care or weren't conscientiously engaged (although some weren't), but I didn't know any healthy people who did the sums about whether it was better to buy British tomatoes grown in heated greenhouses or Spanish tomatoes than needed no extra heat in their cultivation but had to be flown here from Spain.

If you set about trying to manifest your personal goodness as a consumer, you've lost before you start. All organisms consume – everything takes stuff from the environment and uses it in order to live. In the absence of tremendous physical energy, strength and anti-social tendencies, humans are forced to live around other humans and source food, shelter and warmth within the imperfect systems our species have created. Folks can do good when they are wealthy enough to experiment with the greenest new technologies - solar panels, electric cars, zero carbon homes etc. - or when they have the power to confront or change these systems.

Everything else is about minimising the tiny wee flicker of harm an individual has to contribute to the great fiery ball of harm our species is currently causing to one another and our habitat. And yet of course, as long as you're alive, you can always reduce your consumption a little bit further.

Take the thermostat. I have poor circulation and I don't move round much; I get cold and cold makes my pain worse. And I don't go out much at all, so in the winter I need to be in a heated home. For years, I was wearing four or five layers, plus hat and gloves - restricting my movement, using up my precious energy - in order to keep the thermostat as low as possible. But of course, it could have gone lower. I could have put on my coat and stay under the duvet all the time. It could have got colder and I wouldn't have come to great harm - I would have merely been less comfortable. I was suffering, but I was still managing to destroy the planet.

I became obsessed with toiletries – the plastic bottles; the bubbles and chemicals I was sending down the drain. At one point, for quite a while, I didn't use any cosmetic products apart from hand soap and toothpaste. I didn't smell – I bathed as regularly as I could and wore clean clothes, but I never felt clean and my hair looked awful all the time (some people don't need to wash their hair in order for it to look clean but some people really do). But toothpaste tubes - they're not recyclable, are they? I was still generating waste.

What I did spend money on was craft materials because I always intended to use them to make things for other people (and I did, a lot, but of course, I managed to accumulate a lot I hadn't used and felt guilty about that too). I've written before about my angst around stuff and the fear that the mere fact of having things I didn't desperately need was itself a symptom of excessive consumption. I'm not the only person I have seen that in and all my fellow travelers are chronically ill.

Being mature for his age and an extremely empathetic listener, younger Stephen prided himself on the word of praise he most often heard as a teenager and young man; he was a rock. He listened to the problems of friends, family and an abusive girlfriend, then he sought out other troubled people and listened to them too. He joined mental health chatrooms in order to listen to strangers rant and rave, express their violent thoughts towards themselves, sometimes others and occasionally himself. He was there to help people by listening, which was something he was very good at - he wasn't getting off on other people's misery. But when long and distressing conversations damaged his own health - when helping others caused him suffering - he felt he might not be such a bad person after all.

Having grown up (as I did) on a history syllabus awash with graphic images of genocide and torture (and not finding anything suspect about that), Stephen believed that there was virtue to be found in being witness to the suffering of others. Thus he sought out stories and videos of terrible things happening, as if he could absorb some of the pain. "I was already suffering," he says, "so it struck me that I could always take on a bit more."

These days, Stephen doesn't like to be called a rock because he says the thing people like about rocks is that they are unyielding and unfeeling; a rock isn't someone who can be hurt or exhausted by someone clinging onto it, standing on top of it or kicking it repeatedly.

I get this because of the dynamics of my own abusive marriage. There's a stereotype about victims of domestic violence that they have martyr personalities - that they somehow want to be hurt, so they can feel somehow ennobled by the suffering. This is nonsense, mostly because it portrays victims as people who are far more conscious of and in control of these situations than they usually are. However, I did think that putting up with the abuse somehow made me a less terrible person. Of course, the abuse made me feel like a terrible person, so that's kind of circular. But being able to forgive and forget (as I thought I was doing) and keep caring for someone who had hurt me made me feel like I was doing something good.

I guess it's all about guilt again. The things people do to try to avoid feeling guilty don't do any good to anyone. Often they make things worse; doing things for other people in order to ease your own pain can make it a lot harder to concentrate on what other people want and need. Guilt consumes energy which you could be spending on anything else - like looking after yourself. It is possible to care for other people without caring about oneself, but it is very much harder to do other people any good if we don't first take care of ourselves.

We're told as children not to compare ourselves to others, but when we live in a culture which tells us the opposite half a dozen times a day, we need to consciously resist the temptation - not just in terms of whether or not we are good people, but whether we are loveable, important, have adequate electronics and so forth.

According to the Bible, Jesus said,

"Consider the lilies how they grow: they toil not, they spin not; and yet I say unto you, that Solomon in all his glory was not arrayed like one of these."

What Jesus is saying here is dress to impress. Select your pyjamas for both style and comfort.

On a more serious if surreal note, you are something of a lily, dear reader. Earlier on, I said that many people find some sense of being a good person through work because most work benefits others in some way. Well, right now - although I'm writing this partly to organise my own thoughts - you are facilitating this effort, just by being there and reading this, making it worthwhile. You don't have to lift a finger, I might not know you at all, but I'm very grateful that you're there. You are taking a positive part in the universe.

Ajax looking after Stephen
(a black toy poodle sits on the legs of a handsome reclining
white man with dark hair and glasses)

If JC had met any, he might have also asked us to consider the poodles. When Stephen and I lived with my in-laws and their toy poodles, Cassie and Ajax, the six of us were a pack, each with our own role. Cassie and Ajax's principle role was to be looked after; to be fed, taken for walks, played with and let outside to toilet.

For much of the time, Stephen's or my role was also to be looked after and the dogs helped with that; if one of us was stuck in bed, they'd come to visit and sometimes sit with us a while. During such times, none of us were useful, except that we gave and received love. The dogs did and still provide company, structure and purpose to my in-laws' day. Mum and Dad W are both disabled pensioners but nevertheless busy people - it's not like they'd fade away without the dogs to keep them going. But the dogs are important.

Cassie looking after Stephen
(a black toy poodle sits on the legs of a handsome reclining
white man with dark hair and glasses)

The dogs also provide something very special to their human companions. A pet allows a person (with the capacity to look after it) the opportunity to give another living creature a really good life; to increase the sum of happiness in the world. Being someone to love is no bad thing. And almost all of us are that to some people, even if they don't live with and actively look after us.

There are some elements of loss associated with impairment which will never go away. Sometimes I get tearful when Bob Marley sings, "My feet is my only carriage" because I mourn a time when I used to walk everywhere and took that entirely for granted. I still fantasise about going for long walks without having consider wheelchair-suitable terrain. It's fine; I don't wake up each day resenting my incapacity to walk very far, but if I've not stopped pining now, I probably never will.

In the same way, the desire to do good and be useful are pretty basic human inclinations. I genuinely believe that - people fail all the time, prioritising other things or held back by some fear or other, but I think most people want to do good and be useful.

So relative powerlessness is always going to hurt. The important thing is to recognise that our supposed uselessness is very much exaggerated by the disablist world we live in. Everyone is obliged to do what they can and the contribution each individual makes is so personal and nuanced that it can't - and should never - be compared to that of others. If we are still involved in the lives of other people in some way - even in a very passive way - if we love others and let them know that - then we are doing what we can.

Of course we'd blame cancer for plane crash deaths

Discusses suicide and stigma of illness.

Alistair Campbell wrote an article condemning media speculation about the mental health of Andreas Lubitz, the Germanwings co-pilot who, it would seem, deliberately crashed a plane into a mountain, killing 150 people on board. Campbell's article is entitled

Would we be 'blaming' cancer for the deaths of those people who perished in the Alps?

It has been widely shared in my circles, but I keep thinking, "Yeah, we would."

If the guy had cancer, there would have quickly developed a narrative in which, raging against his fate and embittered against the world, the chap decided to end it all and take everyone else with him. This is the basis for almost every disabled super-villain in comics and movies. When they're not warming our hearts, we expect people with physical illness to be angry, bitter and to love life and other people a whole lot less.

The media treatment of depression is significantly worse because it treats this diagnosis - a very commonplace, highly variable condition - as if that explains everything. The guy was (probably) depressed. What more do we need to know?

With cancer, the speculators would have had to expand on that - "He obviously thought the cancer was coming back" or "He was angry that he would die in his twenties while other people would experience all kinds of things he would never get to".

There wouldn't have been headlines which implied that people with cancer should never be allowed in the cockpit of an aeroplane (or presumably, in any of the many positions of great responsibility people with various illnesses regularly occupy). But narratives in which we use physical illness and impairment to explain violence and self-destruction are not uncommon.

Way too often, in describing some oppression, a minority is identified who would never receive such ill-treatment. There were a lot of articles about cripping-up - non-disabled actors playing disabled characters, usually to overblown critical acclaim - following Eddie Redmaine's Oscar win for his role as Stephen Hawking in The Theory of Everything. Many of these articles stated that blackface is a thing of the dim and distant past; you'd never see a white actor play a black character, so why are disabled people so oppressed?  Of course, the corpse of blackface continues to twitch, while white or mixed race actors are routinely cast in historical or fictional roles whose time and geography would suggest black or Asian characters. Meanwhile other groups - like transgender people - get to see themselves represented by their own people even less often.

The mental illness vs. physical illness nonsense is especially disparaging because it demonstrates what an extremely low bar mental health campaigns tend to reach for. They want mental illness to be treated just like physical illness. Being more ambitious, I'd like mental illness to be treated as a morally neutral personal experience, not a symbol or a story, a quirk or a weakness. Many people are able to see it as just that. Culturally, we have a way to go.

Sometimes, people are too sick to work. All kinds of illness, all kinds of work. This doesn't always mean such people don't come into work. They may do so because:

• We live in a culture which treats paid employment as the minimum criteria for a decent and valuable human being. 
• We live in a culture which treats all illness, but especially mental illness, as personal weakness.
• Folk are afraid to disclose illness to employers, especially mental illness.
• Employers often don't take illness seriously, especially mental illness.
• Employers are often freaked out by illness, especially mental illness.
• People don't always know how sick they are.
• Other people, including doctors, don't always know how sick a person is.

In other words, even those who are convinced that a diagnosis of depression poses a significant risk need to care about the further stigmatization of mental illness.  And all other illness, because our culture encourages folk to push themselves and take risks where physical or mental collapse could lead to disaster.

However, depression is entirely inadequate as an explanation for Andreas Lubnitz's actions. Even in the most severe suicidal depression, there's a huge difference between being careless of other people's safety (e.g. stepping in front of a train, driving into traffic) and purposely harming others (e.g. crashing the plane you're piloting).

Robin Williams, narratives of depression and suicide.

In the month since the death of Robin Williams, there has been a lot of social and mainstream media discussion about depression and suicide. This is a good thing. The more we talk about it, the more likely that we might move towards a position where mental illness is seen as the commonplace yet debilitating experience it is, the more likely we are to better manage these conditions as a society and the greater the hope that meaningless deaths and the devastation they cause can be avoided. 

But as with any move towards greater awareness, there are a lot of messages floating around which aren't necessarily helpful, which simplify illness and risk re-enforcing assumptions about mental illness. Emma wrote about the simplistic message that folk just need to tell someone, and I want to talk about other dominant narratives of suicide and depression.

The world at large cannot know what was going through Robin Williams’ mind when he decided to take his life. We know about some sources of stress in his life (a cancelled show, potential bankruptcy, a Parkinson's diagnosis). We know that he had bipolar disorder and a history of alcohol and substance abuse. However, there is no neat story to tell – not right now and maybe never – about what he was thinking and why he did what he did. 

However, that doesn't stop us pretending there is. 

“This is what depression feels like.”

I’ve seen so many articles with this kind of title since the death of Robin Williams and you know what?  That’s not what depression feels like. My experience of depression isn’t exactly extensive – it’s probably about eighteen months, all totted up, but even I can tell you that it feels like physical pain, also numbness, also total emptiness, also like all the colours have been toned down, also utter blackness, also a menacing figure in the corner of the room, also complete indifference, also a bell jar and a black dog. Not all at once, you understand, but it changes.  Meanwhile, symptoms vary hugely between individuals; how much a person can do, how sociable they are, whether they're sleeping all day or not at all, whether they're eating all day or not at all, and so forth. 

I think it’s immensely important to talk about our personal experiences of depression – the biggest barrier for people seeking help is the fear of judgement and misunderstanding, the belief that they are the only person who has ever felt like this (or at least the only person they know). So it really is great that people have the courage to write about their darkest experiences. 

However, framing anything as a definitive account (perhaps especially when it’s beautifully written) plays into the idea that this is a condition which looks one particular way. That readers of such accounts can know exactly how Robin Williams, or any person with depression, must have felt.  

This is especially dangerous when it comes to perceptions of functional impairment; the idea that someone with serious depression can't get out of bed, or will withdraw from the world altogether.  There's a danger of assuming our friend who is having dark thoughts but still making it into work each day will be just fine.

Fortunately, it's possible to be both respectful and compassionate without having to know exactly how a person is feeling at any given moment in time.

#depressionlies

Yes, depression lies.  Depression can make people believe things about themselves, their lives and other people which are not true.  A truly wonderful person can come to hate themselves because of this trick. A very fortunate person surrounded by love and material comforts may hate their life because of this trick. 

But.

Some people experience depression for random chemical reasons, as with post natal depression, but many others have depression caused or compounded by abuse, trauma, discrimination, isolation, physical illness, poverty, heartbreak, bereavement and very often, a combination of these things.  Meanwhile, depression makes a person more vulnerable to negative life events, to poverty, to exploitation, to losing supportive relationships and to other physical and mental health problems. In other words, people with depression are likely to have some very real problems in their lives. 

And people with depression are not believed.  It is much harder for people with mental ill health to get the benefits they’re entitled to.  When someone with depression takes a physical symptom to the doctor, it will often be put down to depression. When someone with depression takes a criminal case to the police, they may be told that they are an unreliable witness. When someone perceived to have a mental illness speaks out about politics, an elected official may advise them to "refrain from commenting in the public domain" as if a diagnosis discredits a person completely. 

People who live with these experiences often wind up with problems trusting themselves, rendering #depressionlies a far more complex message than can be done justice to in 140 characters. 

Meanwhile, all chronic illness lies.  Chronic pain is a lie – the point of pain is to warn you of injury or illness, so you can respond accordingly, recover and avoid whatever made you hurt in the first place. Chronic pain says that there’s a crisis now, when (often, at least) there’s no crisis at all and nothing you can do.  Chronic pain tells you to stay still when you need to move and to move when you need to stay still.

“People don’t die by suicide. They die of depression.”

Suicide is a physical act, not an internal experience. People take their lives in a great variety of circumstances. One person might plan their death a year in advance.  Another person, in the absence of any mental health problem, finds themselves in a difficult situation, panics and departs.  Suicide is not, as one commentator has it, a symptom of depression.

Suicide is a physical act at one particular moment in time - this is one reason why speculating on why Robin Williams, or any other person, died, is ridiculous. All these deaths tell us is that, at one particular moment in time, a person intended either to to gamble with their lives, to inflict severe self-injury or to end their life. Sometimes people die and those left behind have no idea what was going through their minds. Sometimes a person gets very drunk or stoned or desperate or angry and makes a dreadful mistake which would not have occurred to them the following day. The fact that a deceased person had depression doesn't mean they were in complete agony for months leading up to this event. These are tragic deaths.

I feel we desperately need to be honest about this because suicide is highly preventable. One of the great tragedies of suicide is the fact that, in very many circumstances, external events might have disrupted the act. Speak to people with a history of suicidal depression and you frequently hear stories of rescue; this event, this person, this pet, even a personal realisation that struck them at the right moment saved their life. 

Depression is not a simple condition and occasionally, people don't get completely better. But it's often simple kindnesses, responsibilities and thin rays of hope which enable people to survive the worst periods and regain some quality of life. 

Meanwhile, there is a hell of a lot we can do, socially, culturally and politically to help reduce the impact of depression on people's lives, so far fewer people ever get into a position of danger. Both depression and suicide are hugely influenced by sociological factors (including the way that famous suicides are reported).

Describing suicide as if it is something that just happens to depressed people is doing no-one any favours.  It patronises people with depression and renders the rest of us helpless.

Fortunately, we're not.

....

If you're in trouble right now, these links may be useful:

Contact The Samaritans

Mind Directory: Talking Therapies/ Counselling 

Should David Cameron be Sectioned?

There's a change.org petition calling for David Cameron to be detained under Section 2 of the Mental Health Act (the petition isn't that specific; the authors know nothing about mental health so they've just said he should be sectioned). The petition lays out a case as to why Cameron would qualify:

1. David Cameron MP appears to think he is Jesus Christ, and compares himself with Jesus

Cameron hasn't said he is Jesus. He said that Jesus invented the Big Society and that he, David Cameron is carrying on his work. It is a pompous and ridiculous thing to say, especially as the Big Society is whatever Conservative politicians say it is - mostly volunteers stepping up to replace essential services that have lost government funding and Food Banks, the need for which barely existed before they came into power.

However, John Lennon compared his fame to that of Jesus Christ. In one song, he claimed to be a Walrus. Extreme arrogance is not the same thing as a Messiah Complex.

Meanwhile, even sincerely believing oneself to be Jesus Christ is not itself grounds for sectioning.  On a recent television programme, Ian Hislop interviewed a perfectly sane and pleasant man who believes he is King Arthur.  It is possible for people to believe incredibly unlikely things about themselves and the world around them without even being unwell.  Eccentric, for sure. Factually misguided, almost certainly. But as a generality, unless there is considerable personal distress, there is no illness.

The argument continues:

2. He does this despite doing the opposite of what Jesus is recorded to have done, so David Cameron is clearly delusional.

By this thinking, every professed Christian who is homophobic, smacks their kids, accumulates massive wealth or in any way treats other people in ways they themselves would not like to be treated, could be delusional. Only they're not. This is just a mixture of misinterpretation and common or garden hypocrisy. Many if not most of us profess ethical beliefs we sometimes fail to follow.

In some ways, this is the opposite to mental ill health. Some mental illnesses are characterised by a person having beliefs they find impossible to compromise on. Sometimes, it is not the belief that is the problem (e.g washing hands helps guard against infection) but the inability to compromise on that belief to any degree.

3. He refuses to listen to the vast majority of the country, instead pretending everything is fine and refusing to explain himself, instead making idiotic ramblings and carrying out dangerous actions whilst pretending nothing is wrong

He refuses, he pretends. He is not oblivious - he chooses to ignore the people who, as Prime Minister, he is supposed to serve. This is not a sign of ill health, just a sign of a poor governance, ignorance, arrogance and selfishness. David Cameron is behaving very badly. It is possible to do that in perfectly good mental health.

4. He has already harmed thousands. He is a danger to himself and others.

There's no evidence that David Cameron is any danger to himself (his immortal soul notwithstanding). There's no evidence that David Cameron is a direct danger to others. There is no evidence of violence towards others. He has made decisions which have harmed people, even led to deaths, but very indirectly; he has spearheaded austerity measures which have put already very vulnerable people in increasingly vulnerable positions. He is responsible for that.

But this is the point; someone who is not in control of themselves will lash out and could harm people fairly randomly. They have diminished responsibility. Cameron is in control. He is surrounded by advisers and he sits through parliamentary debates where the consequences of his actions are discussed at length. He knows full well what he's doing and chooses to do it anyway.

Other arguments set forth by supporters of the petition include that David Cameron is a psychopath. Psychopathy is a controversial and complex area, but there is some evidence that Cameron exhibits some of the characteristics you might associate with this condition.  However, there are two things to be said about this.

The first is that Cameron is part of a government who collectively exhibit these traits. He is part of a very small but very powerful cultural bubble where it is normal behaviour to dismiss the suffering of others (particularly groups which represent a convenient scapegoat) and to line one's own pockets whilst professing to have the country's best interests at heart. It is impossible to tell whether Cameron would behave as badly in a context where the people around him weren't behaving this way, and giving him permission to do likewise.

Meanwhile, psychopathy, if it can be said to exist, is in the nature of a person and thus untreatable. If someone has not committed a crime, it becomes legally very tricky to detain someone for treatment (Section 3 of the Mental Health Act) when their condition cannot be treated.

I don't need to say, of course, that the idea of a petition to section someone is, if we take it seriously, absolutely terrifying. In days of yore, it was quite easy for wealthy men to get troublesome wives and daughters diagnosed with a serious mental illness and shuffled out of the way into institutions for the rest of their lives. In the mid-twentieth century, it was not uncommon to find people who merely deviated from the general population in some slight way - gay men, sexually active unmarried women, for example - put away and subject to dangerous and damaging treatments for little more than the failure to conform.

Do we really want to imagine a world where it would be possible to persuade doctors to detain and medicate people by a popular vote?  Does that even work as a joke?

So what can this petition achieve? Well, it has already has several effects which one is free to witness both on the petition site and elsewhere in social media :

• It has caused a great deal of amusement at the expense of people with mental illness. Despite the earnest tone of the petition, we shouldn't take this seriously, because it's just a laugh! Mental illness is so funny!
• It has reaffirmed our cultural connection between mental ill health and bad behaviour; David Cameron is bad, therefore he must be mad. The petition states, "This is not an attack on those with mental illness" but saying a thing does not make it so. 
• It has reaffirmed our cultural belief that mental illness is actually worse than evil. The fact that Cameron has overseen so much suffering in the country is one thing, but the reason he ought to be removed from power is because he is mentally unwell. 
• It has promoted ignorance of what mental illness is and how the Mental Health Act works. 

So well done to everyone. And people argue e-petitions are a waste of time.