Monday, May 01, 2017

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

Blogging Against Disablism Day, May 1st 2017
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.]

Audio for this blog post is here:

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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 gamesThe 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.

Wednesday, March 22, 2017

The myth of prejudice, fear and ignorance.

Audio for this blog post is here:

I grew up with the idea that at the origin of all prejudice was ignorance and the fear of difference. Something like,

Those people look different, they act different, I don't understand them and so I am afraid!

It is natural to fear strangers, people would say, but as civilised educated people who know we have nothing to fear, we overcome it. People who fail at this and hate people who don't look, dress or behave like themselves are simply ignorant and more easily afraid.

I had some doubts about this even as a child because as a British white non-disabled child, I was not in the slightest bit afraid of people of colour, people with foreign accents or disabled people. I met people at school – a family of Bangladeshi sisters with albinism, a teacher with cerebral palsy - who looked, dressed, walked and/ or talked very differently from anyone I had ever seen before, even on television or in books. I didn't feel afraid of them in any way. Nobody did.

Meanwhile, the children I saw picking on their black, Asian, fat, skinny or bespectacled classmates did not seem to be afraid, they did not lack information about the children they bullied, nor had they missed out on any of the lessons about tolerance than I had received.

And yet the idea that prejudice was a natural impulse we must learn to overcome held a rather romantic message; for example, as a white person who felt no animosity towards non-white people, I must be a particularly good person. I watched movies where characters who looked a bit like me – although admittedly usually men – were able to rescue groups of black, Asian, Native American or Jewish people from their white or gentile oppressors, occasionally even from one another. In such stories, the villains usually looked a little like me, but the heroes looked and thought like me. These days, there are even versions of this movie, such as Avatar, John Carter and Game of Thrones, where a white hero saves an entirely fictional, fantastic non-white people because this is the way it works.

The idea of a world divided into the good guys, the bad guys, and the helplessly haplessly oppressed in need of my rescue appealed to my childish mind. It was an idea that gave me power.

Every now and again, a disabled friend will be shouted at in the street. Very often (although not always) the assailant is drunk in the middle of the day. Usually, the words shouted are about benefits, accusing the disabled person of being a scrounger, lazy, faking or some variation on this theme.

The victim will post about this experience on Twitter or Facebook. Folks are entirely sympathetic, but there are almost always comments along these lines:

“People just don't understand.”
“People believe everything they read in the papers.”
“People need to be educated about invisible disabilities.”
"People are afraid of what they don't understand."
“People need to spend a day in a wheelchair and see what it feels like.”
“People fear us because disability reminds them of their own mortality.” (Really.)

Street harassment of disabled people has risen steeply in the UK since the Welfare Reform Act of 2011. Political rhetoric sought to justify removing benefits from thousands of people with the idea that a whole load of people were either pretending to be disabled or at least exaggerating their conditions for cash. Hate crime and political rhetoric are undeniably connected.

But this is not because a bully on the street has come to the conclusion that the next person he sees in a wheelchair almost certainly doesn't need it. Nor does a bully look at a passing wheelchair user and feel a cool chill of existential angst as he realises that one day his own beleaguered body will fail and die.

A bully sees a disabled person and he sees a mark. He sees someone who appears physically vulnerable and socially isolated (folk rarely have these experiences in company). All that crap in the papers about scroungers doesn't give this guy a motive to abuse us; it gives him permission. People who shout at us in the street almost certainly have a lot of fear in their lives. But they don't need to be shown stats about benefit fraud. Their fear has nothing to do with us.

In the aftermath of the EU referendum, there was a massive increase in racist and homophobic hate crime in the UK. Nobody became more ignorant and these crimes were not being carried out by people - like EU migrants resident in the UK - who suddenly had something to fear. As a Brit, one of the most painful aspects of the unfortunate US election result was knowing that the same and worse was about to happen over there. Not that the election result made people more racist or homophobic (and the rest), but it made them believe that prejudiced sentiments were more socially acceptable to express in public. This perception literally shifted over night.

This is because prejudice is primarily about power.

We have a limited capacity to know and understand all those who are different from us but such knowledge and understanding are not necessary for respect and compassion. We know that all other people are as human as we are, that they have their strengths and weakness, loves and hates, fears and their desires and that members of any given group – even one brought together by a shared political belief – are not all the same. We know this but applying this at all times is a challenge.

Complaints about “people who...” do annoying, hypocritical or awkward things are common conversational currency – folk unite against a common outsider, however superficially they are defined. I enjoy the BBC TV show Room 101 where celebrity guests talk about their pet hates (rather reduced from Orwell's original), which are very often “people who...”. It's fun and funny because it is playing with this power; part of the joke is to ridicule a certain kind of person but the other part of the joke is the righteous indignation of the celebrity guest about a rather petty subject. It is a safe way for someone to say to a crowd, “Let's wipe people who eat noisily in the cinema from the face of the Earth!” and for that crowd to cheer their assent, united in their faux-loathing. And anyone present who knows that they eat noisily in the cinema can laugh along (or rustle their toffee-wrappers) and has absolutely nothing to fear.

Only usually, we're not joking. Sometimes we're half-joking, but other times we enjoy our righteous indignation with a totally straight face. Sometimes we complain about people who have done or do something wrong - rude, hurtful or harmful - but very often not.

When I first heard discussions about people wearing pyjamas at the supermarket, even I had a taste of smugness about the whole thing. Most days I struggle to get dressed, but only a medical emergency would draw me out of my home in my pyjamas. And thus I had a moment where I enjoyed a warm glow of superiority over people who shop in their sleepwear. Am I offended by this behaviour? Not one iota, but it made me feel good to think that I have risen above those uncouth wastrels by rarely ever leaving the house.

Now that's an ugly confession. We're not supposed to show our pleasure in feeling superior to other people – we're not supposed to admit to a world-view where some people are better than others. So instead we pretend to ourselves and others that we have other motives. It's a scandal! It's very disrespectful! And then we can build on this using our rich arsenal of cultural prejudices.

Okay, so many of the discussions about pyjamas in supermarkets had some humour mixed in, but not nearly enough. Very quickly you could see and hear folk reaching for sexism (this is about women shopping in their pyjamas, women breaking the rules!), fatphobia (these are probably fat and lazy women!), sexism against mothers in particular (these women set a dreadful example to their children!) and social class (these fat crap mothers are undoubtedly chav scum!).

When this January, one Tesco shopper published a picture of two women wearing sleepwear in a store on the Tesco Facebook page, the subjects of that photograph later said they felt they had been targeted as travellers. That's very likely the case; prejudice against travellers is rife and it would have provided yet another reason for some twerp to feel superior to them.

None of this is about the question of whether wearing sleepwear in a supermarket is disrespectful to the people who work there – a question worth asking, but hardly worthy of national debate. This is about taking pleasure in passing judgement on folk who are seen to have transgressed.

So let's imagine if Philip Hammond, our Chancellor of the Exchequer, was seen shopping in the supermarket in his pyjamas. We could criticise his arrogance, but we'd struggle to find much to say besides that. Being very powerful and a millionaire doesn't mean (I hope) that you or I could not consider ourselves Hammond's moral superior, we just don't have the language to back that up. We don't have the language to bring a rich straight cisgender gentile non-disabled white man down without casting aspersions on one of those identities. This is why even someone who is as morally repugnant and personally tragic as Donald Trump is mocked as having small hands or a small penis (not manly), drawn kissing Putin (not straight) or described as mentally ill (not non-disabled).

The pyjamas thing may seem like a trivial example, but when the aforementioned Tesco shopper posted that picture of two traveller women wearing sleepwear in a store on the Tesco Facebook page, he asked the supermarket to stop serving “such people”, adding that, “It's bloody disgusting!”

By which he meant, “I feel so superior to these people that I think I might single-handedly stop them being able to use a supermarket at all. It's bloody amazing!”

But that doesn't mean he wasn't genuinely angry about it. The anger that accompanies righteous indignation is absolutely real. I'm sure this chap felt that he was trying to correct some great wrong in the world and that his actions were public-spirited. He's probably a perfectly nice bloke the rest of the time and may well regret a deed which took just a few moments of excitement.

This is a big problem. We would like people to be on one side of this or the other; good guys and bad guys. Not just because it's simple, but because you and I can be on the right side. As I say, it's a romantic idea, and I believe it is more romantic the more detached you are from the realities of prejudice (which, as a young non-disabled girl who imagined she could grow up to be Indiana Jones, I once was).

We are very social animals and we are constantly concerned with our place around other people. We all have access to a variety of strategies for interacting successfully with other human beings, including very nice things - like sharing our resources, making ourselves useful, making others feel good – then mutual self-interest and the exertion of power; deceiving folk, threatening folk, undermining folk etc.. There are also strategies we employ not as individuals, but as groups. Groups of people bond over common causes and goals, shared experiences, shared jokes, but also belittling, hating and fearing outsiders. Human beings are so very social that we far surpass all other animals in our capacity for destruction and cruelty - but only when our friends are looking on.

Like other primates and many other mammals, we have access to all these strategies, and – when successful, however fleetingly – all of these things feel good. Obviously not all of us use all of them. We make choices based not only on what we've got (if you're very small, physical intimidation may not be your thing), but also on what makes us feel comfortable and good about ourselves.

But just as almost everybody will have felt a violent impulse from time to time, almost all of us have it in us to wish to exert power over others. And when we do so – especially when we're angry or insecure (because fear does play a role in this), it is easy to slip into the patterns our culture has dictated. On the rare occasion I feel a real loathing for someone, I find myself thinking of really insulting and often amusing ways to describe their physical appearance. This despite the fact about half of everything I've ever written might be vaguely summarised as “Don't judge people by their appearance.”

Debbie Cameron wrote recently about the tendency for egalitarian folk to pull apart the grammar and spelling of bigots. I understand and share this impulse; it's funny and satisfying, but it reinforces some of the very cultural hierarchies we are attempting to dismantle. There's a lot of this sort of thing within egalitarian politics, where folks who wish to end prejudice of all kinds nevertheless employ prejudicial language (most often disablist slurs) to insult their political enemies.

This is a point we keep missing again and again. I think folk are afraid of this truth partly because it is unflattering to almost all of us. But mainly, I think, because it makes bigoted behaviour even scarier when you understand that folk take pleasure in placing others as inferior; people and groups enjoy feeling powerful. People and groups enjoy exerting power.

There are other things I want to write about power and prejudice, but I will conclude this post with a very positive example of how this stuff can get better.

Among straight people in my social circle, the short ten years between Civil Partnership and same sex marriage revolutionised attitudes towards LGBTQ+ people (even though trans* people cannot be said to have full marriage equality even now). A wedding is an occasion of collective joy, usually involving many more people that just the brides and grooms. It is a really big deal to refuse a wedding invitation, whether it is for your only son, an old college friend or your great-niece twice removed – people notice, people know about it, people wonder how anyone can be so pig-headed. It is a really big deal to put a dampener on a wedding – not just for the couple but for any member of a wedding party – by making foul jokes about it or insisting it shouldn't be allowed. Even if you are so far removed from things that it's just your colleague that's the mother-of-a-bride, you are socially obliged to smile and coo at her new hat, and afterwards look at the photos and agree that the couple look incredibly beautiful and happy. Anything else is a potential bridge-burner.

Marriage was not a priority for all LGBTQ+ people – some folk object to the whole institution - but it caused the ground to shift. Straight people got to truly celebrate same-sex relationships, to take them seriously (no more of this “Johnny's special friend” to mean Johnny's spouse), to associate these relationships with the formation of family and the consumption of cake, while homophobes increasingly looked like killjoys and bigots. This did not happen overnight and it was not magic – we've not nearly begun to see the end of homophobia, transphobia and the rest. But I've had conversations with folk since 2014 which would have been inconceivable in 2004 and vice versa, because queer people started getting married. 

This happened not merely because people's minds were changed by reasonable argument (although that's part of this), but because of both positive and negative social pressure; it's nice to be participate in other people's good news, fewer people were going to laugh at those jokes or nod sagely at those bigoted remarks and more people were prepared to object. All this can work, not just to silence increasingly unpopular views, but to change people's minds, to knock the wind out of the sails of their prejudice and bring them around.

People will hold onto prejudice when it gives them power. Remove that power, all of it, and folks do let go. 

Saturday, December 24, 2016

Thirty Six

Today is my thirty sixth birthday.

A chaotic December meant I didn't do this last year, but I thought I should try to review this year, particularly as it featured such big chunks where I've been decidedly unwell, and there were so many things I wanted to do, had agreed to do or half-started that I then had to give up because of my deteriorating health. Before I started writing things down, it felt like there would be very little to say, but I did really quite a lot in the spring and haven't been completely idle since. This is going to read like a dreadful bragging Christmas Letter, but it's my birthday and this is mostly for my own sake.
  • I had started doing a bit of editing for the F-Word towards the end of last year, but I think it was at the beginning of this year that I officially became Features Editor. Then my health deteriorated and I had to give it up this summer, but it was a very interesting and satisfying experience - I had previously enjoyed the mechanics of editing other people's work, but the best bit was facilitating others to say what they wanted to say to a significant audience. 
    I model a winter lettuce - a woman with a lot of hair holds
    a lovely green lettuce as big as her head.
  • Early on in the year, I planted a load of vegetables. As the spring progressed into summer, my health meant things got a bit out of control, but those things that weren't killed off by neglect included tomatoes, lettuces, a small amount of pak choi (the caterpillars do love the stuff), radishes, baby sweetcorn (that was particularly good), peas, strawberries, French beans and runner beans. Oh and potatoes - lots of potatoes grown in sacks. I now have two table-height vegetable patches in the garden so I don't have to bend down.
  • I had written this article last December but it was published this year and I'm very proud of it.
  • We looked after a lovely old border collie for about a month, which was rather nice.
  • I have had a lump in my armpit for the past six months. After the first two, it triggered NHS Lump Panic, eight individual strangers got to see my naked breasts in one afternoon but it was all fine. All this happened at a time when I could really have done with a break, but the care I received at the Breast Clinic was extremely good. Do get your lumps checked out.
    I model the mermaid's tail - an enormous
    mermaid reclines in a wicker chair with a
    somewhat seasick expression on her face.
  • I made a mermaid's tail sleeping bag for my niece. I scrapped an earlier attempt because it was a bit too small - at least, a four year old would grow out of it in no time. The finished version should serve her well if she is still interested in being a mermaid into middle age.
  • I wrote quite a few blog posts and a couple of features for the F Word in the first half of the year. My favourite is this about women who, by virtue of being disabled, old, fat etc. are considered sexually and romantically unattractive by our culture.
  • I drove a car! I have had a provisional license for a few years, but this year, on one occasion, I actually drove. It was awesome!
  • It was the twentieth anniversary of my becoming sick in August, so I wrote a series of posts about chronic illness and coming to terms with loss. As, if you're reading this, you are almost certainly aware.
  • I have been writing and editing fiction. Just not nearly as often or as enough as I would like.
  • In the midst of everything, they happened to discover that I was very deficient in Vitamin D. I've now got an evangelical zeal about telling folks who also might not get out much that they should get their Vitamin D checked. However, I am too polite to give unsolicited health advice, so this may be the only time I ever mention it. 
  • Purple Prose, a book about being bisexual in the UK was published. It includes some of my words as well as the words of far more interesting and brilliant people.
  • My Dad retired, which has been absolutely great. His work was stressful and now he is not only very much more relaxed, but we see a lot more of him and have had some modest adventures together.
  • I had lessons in the Alexander Technique to improve my posture, which is something I have fancied doing for years. Of course it hasn't fixed anything, but it has dramatically reduced certain kinds of pain in my back.
Snuffles the hedgehog - a fluffy brown hedgehog eats from
a dish of mealworms. She was one ill-tempered hedgehog.
  • We installed a camera to watch the garden after we'd gone to sleep, to monitor the full extent of hedgehog activity. We saw a lot of hedgehogs and one night, a tawny owl landed in the garden and sat down with one of the hedgehogs to have a meal.
  • Stephen acquired a tabletop game called Zombicide, where you go round killing zombies with dice rolls. This turned out to be tremendous fun and we have spent several happy evenings liberating prison blocks from the zombie hoards. 
  • We saw a little more of our nephew and niece this year and had some really good times with them. They are both fantastic children and so much fun to be around. 
A young blackbird - a brown bird with pronounced beak and
speckled breast, sitting in a bush with white flowers.
  • We think at least one hedgehog was born in the garden this year, as were some sparrows and a blackbird (left). This chap startled me when I was trying to see if he was still in the nest.
  • Politics has been pretty grim. The world's progress towards being a more peaceful, freer, happier, healthier place - which has been considerable, even in very recent times - is in grave danger of stalling. A very great number of good folk have brought that progress about through hard work and I hope, a similar effort by very many people in both big and small ways will get us back on track. That may sound a bit crass amid all this light personal news, but like a lot of people, politics has been deeply personal this year.
  • We managed to get to the theatre for the first time in a few years to see the Cambridge Greek Play do Antigone and Lysistrata. The latter was particularly brilliant, satirising the ongoing political nonsense and with songs in Ancient Greek we were all invited to sing along with. 
Two happy people at a picnic bench
with a field in the background.
  • As everyone knows, Stephen is an amazing person, but he has been particularly heroic this year. We've always performed care for one another in ways which merge with everyday kindnesses and physical expressions of affection, but this year the work of keeping us going has shifted very heavily onto his shoulders. While it has been tough, we have not only survived, but we've often had a great deal of fun.
  • It's been a very difficult year for several of our friends and family; other people have had major health crises, bereavement and money worries, as well as the personal effects of the year's disastrous political events. Thus I come to the end of 2016 with a heart full of love and hope that next year is much much better and brighter for those who have had to battle through to this point.
I hope that anyone who actually read down this far has a wonderful, peaceful holiday season whatever you're doing with it and a very happy New Year.

Friday, December 16, 2016

On Loss & Chronic Illness - Acceptance

[Content note: This post has a lot about status-anxiety and thus issues of self-esteem and the judgement of others. Passing reference to diet talk.]

I managed to do the audio for this but it's not brilliant:

As I've mentioned in previous posts, the Kubler-Ross stages of grief are not about a fixed and inevitable sequence. They are merely common experiences which are likely to happen in this approximate order following loss. However, with chronic illness as with other dramatic and complicated losses, we are very likely to revisit earlier stages.

This is the bad news about acceptance; the first time we feel that we've accepted our loss is undoubtedly a breakthrough, but this is very unlikely to be something that happens once and forever. This is partly why I've been writing about loss and chronic illness a full twenty years since I first got sick. I have absolutely come to terms with what happened back then. I sometimes have to come to terms with what is happening now.

Our dominant triumph over adversity narrative means that those stories about chronic illness which aren't about the search for a cure or heroically raising Awareness are usually about spectacular reinvention: Chronic illness ended my career as a stock-broker but now I'm building a million pound empire by hand-knitting mushroom-warmers.

Reinvention is inevitable but the creation of a new life which somehow mitigates all the problems associated with chronic illness is unlikely. It's a very rare chronic illness which doesn't fluctuate over time. Some are very likely to deteriorate. Some have a good chance of improving to some extent, which is not a straight-forward prospect either. Life circumstances can and probably will change in a way that draws loss back into focus.

It may be you find peace, comfort and creative fulfilment in spending your days hand-knitting mushroom-warmers. But this could happen without making a penny and there's no realistic prospect of replacing a stock-broker's income. It won't get you out of the house or provide the interactions or social standing associated with your previous work. Plus, despite the relative low pressure, knitting good-quality items and selling such knitted items is neither effortless, stress-free nor unaffected by fallow periods.

By definition, chronic illness can't be fixed. But having come to terms with that, it is vitally important to recognise that the life-changing effects of chronic illness cannot be magicked away either. My previous posts have been about how our disablist culture makes it so much more difficult to move through stages of grief when we become chronically ill. This post is about making sure we don't replace all that with some other equally futile struggle imposed by a culture that doesn't want us to let go of this particular kind of loss.

For the first ten or so years of my illness, my energy was focussed on a sequence of rather unhelpful questions:

How can I regain my health?
If I can't regain my health, how can I complete my formal education?
If I can't complete my education, how can I make money when I'm too sick to work?
If I can't make money, how can I stop other people thinking I'm a waste of space?

Ultimately, for me, the answer was the same in every case. At 35, I am in worse health than in my late teens, I have just 3 GCSEs to my name and I've been dependent on benefits my whole adult life. Various adventures in higher education came to nothing. I am occasionally paid for my work but could never do enough to regularly supplement my income, let alone replace the state benefits I receive. We live in a culture where a successful person is generally understood to be someone with a well-paid fulfilling job. By that measure, I am a complete and utter failure.

Of course, I am not and nearly nobody thinks I am. But we do need to talk about status.

Small children are told not to compare themselves with others, but then schools, advertising and often even their parents will ask them to do just that. This only increases as we get older, as we are sold the political myth of meritocracy; the idea that how rich, successful, beautiful and healthy people are is a reflection of their virtues and personal efforts. Or perhaps worse; the idea that this should be the case and if we're not as rich, successful, beautiful and healthy as we deserve to be, then something has gone drastically wrong – either with ourselves or with other people.

People with chronic illnesses don't live apart from our status-anxious society, and circumstances – isolation, frustration, time on our hands – can make status-anxiety even worse than for folks who are busy getting on with other things. The whole game is rigged, but we have even less opportunity than most to even take a punt.

Even folk who are able to work with chronic illness are acutely aware of the scrounger rhetoric which might be applied to anyone who is not functioning at a hundred percent. We hear about the “hard working families” for whom politicians claim to speak (so not us?), as well as receiving the steady drip of advertising and aspirational TV where the most valuable people are wealthy healthy consumers. Even cultural advice around health is status-based; there's a reason New Age magazines promote total silence (bad news for most human brains) as necessary for “true rest”, why newspapers focus on exotically-grown produce your gran never heard of as health-giving foods, when all their nutrients can be found in cheap local veg and cereals. Health is about status too and there's cultural capital to be gained in looking after yourself expensively and elaborately.

Added to this are the dominant stories of tragedy and triumph over adversity which are told about people like us, the supercrip image of every disabled person we see on TV who is neither a villain nor an object of pity. They are geniuses with mental illness, they are blind pilots, they are wheelchair-users who climb mountains. It's bad enough that we can't possibly keep up with our peers, can't work as much as them, can't earn as much, can't do as much in any regard and have far more limited choices around family and relationships. If we start comparing ourselves to the most visible disabled people within our culture, we're in even more trouble.

Of course, we rarely talk about this stuff explicitly; we don't acknowledge the race, so it's hard to come to terms when you have well and truly fallen out of it.

I've not entirely sorted myself out with status. Working makes me feel good. But interruptions to that are frustrating to me not only because I can't do the thing I find uniquely enjoyable and fulfilling. Nor is it even the lack of feedback, which matters too – few people write only for the page. The less I write, the less I feel like a writer. The less paid work I do (which isn't much at the best of times), the less I feel like a writer. The more slowly I move towards getting a novel published, the less I feel like a writer. And of course my identity shouldn't hinge on being any one thing, but there's part of me that feels that if I am not a writer, I am not anything; I am without value. Which is nonsense and I know it.

I know other people who are able to do even less of the things they are passionate about, or people whose health is much better than mine who lack such a central focus. I don't for a moment think less of them; I know I'm extremely lucky that writing was always there. But this is the nature of status-anxiety; we anticipate judgement in situations where we'd never pass any ourselves. Just the other day, my Mum explained her nervousness about a couple of upcoming social events, in terms of her being “just a school secretary”. She explained that being in her sixties and still working for the kind of pay that a school secretary receives suggests someone who lacks the ambition, drive and intelligence to get further and do something more impressive.

So I said, “If you imagine other people think that about you, what do you imagine people think about me?”

And of course, she didn't imagine anyone would turn their nose up at me or any of her friends or family members who are out of work, or who work as cleaners or in supermarkets; she would be positively outraged at the suggestion that any of us were in these positions because we lacked ambition, drive or intelligence. We apply a different standard to ourselves, but every time we vocalise this unexamined, we risk raising the unrealistic standards of those around us.

One of the biggest problems is that disabled people are conditioned to explain ourselves to others in much the same way we would explain ourselves to doctors or the DWP; there's a reason why we answer rude questions when others would not. I have heard friends explain their conditions and their work/benefit status to strangers in all kinds of circumstances where people didn't need to know about either.

Of course, people respond to the information they're given. If you tell someone you're a jet pilot, they will talk to you about planes and travel. If you tell someone you have Lupus and haven't worked for five years, they will come up with an anecdote about an uncle who had Lyme Disease (it begins with L, after all), a deeply personal question about your condition and a suggestion for work they imagine you might be able to do because it doesn't involve a lot of standing up.

This is bound to make you feel fairly crap about yourself, and reinforces the idea that you are set apart from other people, from some mythical normal world of health and success.

I imagine this is made even more difficult for firmly middle class sick people who don't meet any of the millions of working people who readily avoid talking about their jobs because they're either boring or unpleasant (some wealthier people have rubbish jobs, but they're handsomely paid and respected for the tedium). For perhaps the majority of working people, even when it's reasonably enjoyable and fulfilling, work doesn't reflect who a person is, but merely what they do on weekdays to pay the bills.

It is not that people with chronic illness should be ashamed of anything – our health, our work status or anything else - but there's much to be gained from presenting ourselves as who we really are, what we really do, rather than starting all interactions with the excuse we have for not being like other people.

There's one of those inspiration porn memes which features an amputee child running on a race track with the slogan, “What's your excuse?”

And of course it's silly and offensive in ways that don't need to be covered here, but there's a tiny part of me which responds, “I have an excuse. Do I need to let anyone know about that?”

Some people feel they do. As mentioned in my Sadness post, I have come across folks who perform the role cast to them as unfortunate ill person, motivated in part by the mistaken belief that the bullying and skepticism disabled people face is due to ignorance, and enough information can put everything right. I'm not talking about folk who merely discuss their health or even complain about it a lot, but the chronic illness equivalent of those women who perform motherhood – not just talking about or referring to the experience, but placing every topic of conversation within that context, vocalising the most mundane aspects of it, demonstrating how they're doing the right thing (often elaborately and expensively) at all times. Either involves a lot of generalisation; motherhood feels like this, life with chronic illness feels like that. And while the performance of motherhood tends to exude positivity – it's the toughest job in the world but the most rewarding! – the performance of chronic illness is about suffering; it's just the toughest damn job in the world.

It is an ongoing sick note to the world and of course, that answers the issue of status: I would be doing amazing things if I was not ill, but instead I'm doing an amazing job of being ill, fighting it and documenting it to inspire and inform others. And this can be really difficult for the rest of us to be around.

It contributes to a culture where disabled people are defined by our impairments and non-disabled people believe they have a right to expect a moving and detailed account of our lives and suffering – non-disabled people get to keep the power. Bullies get to keep on bullying.

Yet beyond this, even though I am acutely conscious of these politics, when I meet with such performances, I find myself doubting my own perspective on illness. I've always managed to be reasonably upbeat but at this point in my life, I find myself particularly blessed; I am married to Stephen, I have some great friends, my family relationships are the best they've ever been, I love my home which has a garden and the garden has hedgehogs living in it. I have some big health-related frustrations impact on my work – especially this year – and upsets and worries occur from time to time, but otherwise, I'm really enjoying my life.

Stephen has always enjoyed the Eurovision Song Contest and because I'm so cool, the first time I watched it with him, I kept thinking, “I can't be enjoying it this much. Not really. There is nothing cool about this. Maybe I am only enjoying it ironically?”

And in the same way, when confronted by people whose mission it is to let the world know, in all their interactions, how an illness like the one I have has ruined their lives, there's a part of me that thinks, “Maybe I'm kidding myself? Maybe it is impossible to be as content as I think I am?” After all, these folks have much of our culture on their side; we're not supposed to be happy.

But louder than that, there's a part of me which thinks, “Maybe other people think badly of me, because I don't do this stuff. Maybe when I'm not around for a while, people just think I don't care about them, that I'm busy with other things. Maybe people look at how little I achieve and assume I'm just lazy. Maybe people think I'm a scrounger. Maybe people think I don't look after myself properly because I don't detail all the boring ways I look after myself.”

And of course, this is why people do this stuff in the first place; this performance of illness is, to some extent, what our culture expects of us. If I was a character in a book or a film, the first thing you'd know about me was my medical history; my character or people close to me would discuss it at length. You would see me gritting my teeth in pain, taking medicine, lying about looking unwell and so forth. You would see this because my character would be all about pathos; my illness would function as a reason to feel sorry for me and for those who care for me.

In the face of oppressions, big and small, some folk imagine that sympathy will hold back the dogs. In reality, there's no way round the fact that some people will pass judgement on me given the society I live in. It's very rare these days that anyone expresses anger towards me, but when they do, they always manage some snide remark about my health or the way I manage it. No amount of information is ever going to shut that down.

Avoiding these kinds of people and this kind of thinking is as essential to acceptance as avoiding folks who constantly talk about how fat and hideous they are and what diets they're on when you're trying to feel okay about the size of your bum.

The question I should have asked much sooner than I did was

How can I live the best possible life I can within what limitations I have?

Which sounds obvious and easy enough, but is in fact a tremendously complex question. It demands we look at what our actual limits are - and not in a pseudo-existentialist, the only limits are the ones we impose upon ourselves kind of way. Our health is not only a limitation, but most likely a changing limitation. We all need some money so we need to source this, whether through a new way of working, wrestling the benefits system, relying on a working partner or finding some kindly eccentric benefactor. We need food, clean clothes and to live in a reasonably sanitary environment, so we need some way of making sure that happens. If we are a parent or a carer, we need to make sure that parenting or caring carries on. All these limitations are real, often quite messy and prone to change even when our health doesn't.

And then there's the matter of what is best. If there's any left after we have secured our basic maintenance, what should we spend our time and energy on? The thing that's most fun, the thing that's most fulfilling, the thing that's most useful to the world or the thing which makes us most comfortable materially?

Of course, these are not chronic illness questions, but being alive questions. Everyone has limitations. Everyone. Some people undoubtedly have much easier lives than you or I, but very many people who don't have chronic illness nevertheless face a lot of limitations and complexities on their particular journeys through life.

There's a tendency for people with chronic illness to feel set apart from some mythical well world where everything is straight-forward and I understand that – I have had conversations with friends and family where it's taken me less time to say what I've been up to in a month than they take to report on a single day.

However, acceptance means moving on from the sense that our little piece of the world has stopped turning while everything else carries on like nothing's happened, that sense that separates us from those with different experiences. In the same way, when we finally come to terms with a death, the imposing sense of that empty chair eases; the chair remains empty, but it no longer dominates the room.

Again, this is complicated by the fact that acceptance isn't a happy ending we arrive at just once – with chronic illness, we are likely to experience loss again, our world will once again stall on its rotation. But having reached acceptance already, it gets easier to ride out our inclination toward denial, anger, bargaining and sadness and get it turning once again.

Wednesday, October 12, 2016

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!