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.

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 - Anger

Content warning for brief references to self-harm, domestic abuse and all variety of disablist nonsense.

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:


The perfect management of a fluctuating chronic illness is impossible. So long as the precise nuances of your body and brain remain unseen, you will overdo it. You may sometimes be over-cautious and do less than you could. And you won't really know what you've done until it hurts a lot more.

Beyond this, you sometimes do too much because there's something you want to do, or get done, or because you're frustrated, angry or anxious and you can't stand to stay still with that feeling.

When I first began to realise this – that things would not improve just by pushing and pushing – I was filled me with rage towards myself. I would swear at and curse myself out loud. I was disgusted with a body which refused to co-operate. I injured myself and made half-hearted attempts on my life. It wasn't that I was sad or disappointed in myself; I was livid.

At this time, I began talking to the man who would become my first husband. This person carried a hell of lot of red flags, but having tricked myself into ridiculous hope, I no longer trusted my instincts. One of these red flags was the fact that this man in his mid-thirties was angry all the time at pretty much everything, even with a teenager he was talking to on-line. However, I felt crap about myself, and this anger made more sense than the kindness and support of my true friends; I figured they must be deceived about me, while he was not.



Our culture isn't great when it comes to extreme negative emotions like sadness or anxiety, but it's pretty atrocious when it comes to anger. For one thing, there is a profound social hierarchy in who is allowed to express anger. Rich white powerful men are allowed to shout at and mock their colleagues in public and yet remain in charge of us all. Another can physically assault his subordinate and maintain much of his public favour.

Women are taken much less seriously than men if they show anger and while many stereotypes about women of colour are about being submissive and demure, the first sign of anger can flip this on its head; the eager-to-please East Asian becomes the Dragon Lady, the submissive Muslim stereotype becomes a terrorist and so on. Our culture is particularly wary of angry black people, particularly black men. This makes sense in terms of our imperialist history; it's a good idea to be afraid of anger in people you're trying to control or crush.

Disabled people are another category who are not supposed to be angry except in very specific contexts: a young white man who has been physically injured during heroic activity (war, fire-fighting, police work etc.) is allowed to express anger if he channels it into successful rehabilitation. Almost anything else and you're heading into disabled villain territory.

This is one reason that I've struggled to write about anger and loss. Anger is a natural stage of grief and recovery from any kind of loss and trauma – it's okay for anyone to feel angry about their experiences and the injustice in the world. In fact, to be angry about the hurt one has experienced is often a first step in valuing oneself and one's safety.

For people with chronic illness the problems are fourfold:

1. You're not supposed to be angry. When people admire a sick person, they say, “They're really suffering, but they never complain!” Meanwhile, you're supposed to respond to those around you with gratitude that you're being looked after (even when they're not looking after you) – you're certainly not supposed to get angry with them. If you get angry, you might be left entirely on your own when you literally can't survive without help.
   
   There are some situations where showing the slightest frustration with someone who has power over your life – a medical professional, an employer you're negotiating access with, someone from the benefits agencies – can have you pigeon-holed as a trouble-maker. This is especially the case for people with mental ill health, who can even acquire new diagnostic labels for arguing with their doctors.


2. Competing with fear, anger might be the most exhausting emotional state to be in. Your body prepares for physical conflict, your heart races, your breathing becomes shallow, your muscles tense and blood is diverted from normally essential things like digesting food. Anger can make a healthy person feel pretty sick. For sick people, the physical tension of anger can cause a lasting increase in pain. It can cause gastrointestinal symptoms that go on for days. And while sadness drains energy like a hole in a bucket, anger pumps it out of you.


3. In chronic illness, anger often has no place to go. Sometimes, you're literally stuck in a room either with its source or completely alone, with no way of addressing or venting it. Sometimes it's impossible to even talk about it or write it down. Gobble gobble gobble.


4. As well as the anger associated with the multiple losses involved in chronic illness, we have plenty else to be angry about. Disablism, discrimination, poor access, crap from benefits agencies. Unhelpful, sometimes cruel remarks and behaviour from family and friends. Plus misdiagnosis, medical bureaucracy, abuse and negligence are immensely common – not because doctors are a bad bunch, but because having a chronic condition means we see dozens of them over the years and are bound to encounter the occasionally horror. Trouble is that horrific doctors can cause lasting damage. 

A particular trouble with disablism is that often we experience injustice which simultaneously insults us personally and denies our loss. When the DWP decides we can do things we can't, when folks express envy that we don't have to go to work and when politicians talk about encouraging us to do the right thing, they're not only implying dishonesty, laziness or other character flaws on our part, but they are denying the limitations we have and the things we've lost. For people with conditions that involve suffering, they are denying this suffering. This is one reason why, unhappily, a lot of disability politics has gone Tragedy Model over the last six years, with folks arguing for their basic rights, not on the grounds of the intrinsic equality of all people, but on the grounds of compassion.

A cousin was telling me about a colleague who had a condition a bit like mine, although much less severe – this lady was still in full time work, although it was an increasing struggle. My cousin had explained to his colleague about me and my medical history. He said, “I told her, it must have been so much easier for you. She's in her forties with a job, a couple of children and a mortgage, whereas you were only fifteen and didn't really have anything to lose.”

Thus I find my entire identity reduced to that of sick person – all I ever was or am or will be. This happens quite a lot. In hospitals and doctor's offices, I am a collection of symptoms. I've currently got my ESA form-filling file open (not for fun - I have a form to do); 6000 words about the intimate details of my daily life. And it has nothing about me in it, no whisper of who I am, what I care about or what I'm good at. 

In the media and the mouths of politicians, folk like me (especially those of us who have few formal qualifications and have never had a full-time job) are talked about as if we are blank people without interests, skills or experiences - either to be filed neatly out of the way (those who need the most help) or to be pressed, moulded and trained up into real coloured-in people (ordinary hard-working families).

The temptation is to respond to this stuff with protests of what might have been – the dominant Tragedy Model narrative; the way we are taught to tell our stories. My cousin's colleague wasn't going to lose her children and was unlikely to lose her job – things I had lost before I even had a punt at them. I might have had a glittering career, made a profound contribution to the world with whatever path I took, earned a fortune and been someone my cousin boasted about as opposed to someone whose story can be shared as an example of a non-life.

But that's a game I'm bound to lose. For one thing, it's nonsense;  I would have had a very ordinary life, working jobs I liked and jobs I didn't, with spells of unemployment in between. I know healthy people who travel through life clutching onto a narrative of what could have been if only they'd been in the right place at the right time, and it's both sad and deeply unbecoming – there's always the implication that such people are somehow better than the average-wage life they actually have, thus somehow better than their colleagues, their friends and neighbours and most certainly people like me.

It's also a story of disabled life which focuses on the contrast with the non-disabled life which never happened. And although I'm writing about loss, I am not prepared to escape the identity of sick useless person who would never have amounted to anything by signing up to be a non-disabled person trapped inside the life of a disabled person. 

I often see people with chronic illness on social media declare that illness destroyed or ruined their life, stole their youth or future - sometimes in the first person plural; our lives, our youths, our futures. I'm very lucky this didn't happen to me. Illness helped shape a life which was different to the one I had expected. This life features a degree of ongoing loss and frustration because I am a sick person living in a disablist world. 

When I was fifteen, I had a hell of a lot to lose and I lost a very great deal. But I'm far more upset now by what I'm losing as a thirty-five year old. I have friends and family I hardly see - right now my 92 year old Granny is in a bad way and I'm not well enough to visit. Weeks pass when I can't leave the house and there are all kinds of social and cultural events I can't join in with. I'd like to have a dog.

I have acquired talents, expertise and experience which I am only able to put to limited use. Right now, I don't fantasise about having more money, but I deeply envy people who have jobs that fulfil them and make them feel useful. I know full well – because I work hard myself – that no activity is universally pleasurable and fulfilling. But I envy the opportunity to spend more than a few hours, randomly distributed across the week, doing what I do well.

And this is okay. I can and do live with this in much the same way as I live with the loss of loved ones I long to talk to again. It's a recurring pang, not a bleeding wound. It doesn't ruin my life.

However, I struggle when this loss is denied.  

In social justice circles, I often see arguments in favour of anger. The thinking goes like this: women and minority groups are discouraged from showing anger by the very same culture which gives us all kinds of reasons to be very angry indeed. David has written about it just this weekend. Learning that it is okay to feel angry can be a first vital step of our resistance.

This is sometimes extended into a command to get angry and stay angry, to express anger. Which is all very well if you're lucky enough to be able to channel your anger into something useful and productive without harming yourself or others. It's pretty hopeless if you're lying in bed, unable to do anything yet unable to sleep or rest properly because you're seething with rage.

So I have a different philosophy. It is okay to feel anger. Anger is a natural and important response to loss, trauma or injustice - if you try not to feel it, you're likely to run into trouble.

But having felt that anger, it really would be wise to seek out a way to open that clenched fist and let it go.

Another problem with anger – and its sister, guilt - is that it demands legitimacy. We might feel sad about lots of things, and sometimes feel foolish for feeling sad, but with anger, we can repress it because we think we're wrong to be angry, or get lost in it because we have a right be angry; someone or something deserves our anger, and us being angry is just.

But other people don't live in our hearts; nobody is punished by our anger or comforted by our guilt.

Meanwhile, the behaviours we adopt to cope with anger can be habit-forming and eventually dangerous. Various forms of explosive behaviour can cause an addictive release of endorphins, including things we do to ourselves like self-harm, starvation or over-exercise, as well as things we might do to other people and objects. Ranting on the internet at nobody in particular can be a fairly benign way of releasing all this unhelpful adrenaline, but it can do the same thing.

All angry behaviours are likely to escalate. You know that thing about how swearing is a great painkiller? Well, that's true, but only if you don't usually swear and you're not often in pain. If you're always stubbing your toe and responding with elaborate blasphemy and curses, they won't be working too well – you have to swear harder, louder and more disgustingly, in order to have any effect.

Behaviours don't actually have to feel good in order to become habits; they just have to provide relief.  

This is why Twitter is as it is - of course, Twitter is awash with love and kindness, but there are folk about, of all stripes, at all points on every political spectrum, who are permanently pissed off. Many of those people have something very real and horrible to be angry about, but without a break from it, it's only going to get worse.

When I used to belong to illness-specific support groups, I saw the same; some folk were angry and supported one another in anger to the extent that they believed that their illness was by far the most stigmatised, that people without their diagnosis couldn't understand them, that some people with their diagnosis were giving the others a bad name by having different kinds of symptoms and limitations. Some wholeheartedly believed that other people's willful neglect was keeping them ill; that if only enough attention was paid to their condition, a cure would have been found years ago. None of these people had had an easy time or been treated with the full respect and care they deserved and for a few, the actions of others had undoubtedly damaged their health. However, the belief that other people have ruined your life (because such people did see their lives as ruined) is pretty much impossible to resolve.

It's going to be recurring theme in these posts about loss, but the disability rights movement helped me stop being angry with myself. Understanding the socially-constructed nature of disability doesn't stop me wishing I had less pain and more energy, but my body is off the hook in some major respects: I would love to be able to walk about, but the mere fact of having to move around on wheels should not mean I'm profoundly limited on where I can go and what I can do. Meanwhile, to operate with any sense of blame and innocence when it comes to ill health is to play into hierarchies which oppress us all.

It helped a lot when I stopped being around angry people. To avoid other people's anger altogether would be to avoid anyone in pain or having a crap time and I don't mean that at all. But for a long time, I was attracted to misanthropes. I didn't hope for love (or trust it, because it was always there somewhere) so I sought toleration; I was attracted to people who hated everyone but begrudgingly tolerated me. It felt like the safest kind of special status. Thus I lived with domestic violence for over ten years, with someone who was even angrier with me than I was.

However one great lesson I learned from the aftermath and recovery from that is about trauma. Trauma victims and survivors frequently blame themselves for what they've experienced because the psyche abhors helplessness; it is far easier, psychologically, to take on responsibility for things that were far beyond your control than to admit to yourself that you had no real choice. This is evolution; organisms that maintain undying faith in their power to avoid or escape perilous situations are more likely to survive.

Of course, in adult abusive relationships, there are choices, but greatly diminished ones. In illness - also a traumatic business - there are choices, but again, these are diminished. You can't see what's ahead. You can't stop the world. You can never avoid risk. Your health is complicated and sometimes one aspect must take a hit on behalf of another. Some things matter more than health.

But most of all, again from listening to others on disability rights, I learned that my health is a morally neutral fact. If I am less well, it matters only as much as it matters to me.  I can only let anyone down if I make a promise and choose the day before my presence is needed to experiment with the unicycle. This is not something I often do.

Managing anger with things outside myself is all about identity. We talk about identity a lot, not because it makes us feel special or interesting, because these are things others reduce us to and we wish to resist this reduction. Disengaging from these identities, (insisting, "I don't consider myself disabled!"), just doesn't work for most of us. However, because we find ourselves reduced to a disabled person, a wheelchair user, a benefit claimant, a psychological services user and/ or a person with chronic illness, it's important to hold onto everything else we happen to be.

So, there are three things I try to remember about all the crap we receive as people with chronic illness:

1. I'm not alone in this experience, even if I'm alone at that moment in time. Someone else has been through this. Some experiences (like having trouble with benefits agencies) are almost universal. Some experiences come down to tremendous bad luck. Some people are victimised because of a combination of attributes which our culture struggles with, e.g. having a mental illness and a physical impairment, and being working class, a person of colour, LGBT, fat etc.. 


2. This crap is all about other people, fear and power, and the systems they create. Discrimination is very rarely motivated by conscientious belief. The nonsense disabled people have from benefits agencies is not about genuine mistrust (although that's how it manifests) – they simply wish to maximise the number of people who, overwhelmed or disheartened, will give up before they get the correct award. Politicians create narratives about hard working tax-payers' and benefit scroungers in order to distract from the origins of our economic problems. Right wing politicians are sometimes very good at advocating for their constituents with benefit problems – people can and often do believe two things at once.
   
   Street harassment, the bullying remarks of colleagues, family and other acquaintances are mostly about power and fear. These people are bullies (whether they do it all the time or once in a blue moon) and the issue is about them, their insecurities and anxieties. They say stupid things relating to our health because they can - because we live in a culture which treats disabled people as charity cases, demanding proof of our deservingness, legitimising speculation about whether our impairments are exaggerated, badly managed or taken advantage of. 


3. This stuff is never about who we are. None of us will never be everyone's cup of tea, but people who know and like us will, of course, be largely disinterested in our health, how we manage it, if and how much we work. They will be interested in us, what we're interested in, what we're good at, what we're passionate about. And when I do my own thing, exercise my skills, listen to the music I love etc., I am not anything like the person those bastards want me to be.

None of this is to minimise the scale of injustice – all these things applied to the disabled people entering the first gas chambers, along with everyone else who ever ended up being abused, tortured or killed for some aspect of their identity. The fact that prejudice is rarely authentic – that is, it is rarely arrived at through any kind of conscientious rational thought process – doesn't make it any less dangerous. This is in no way a sticks and stones argument. Sometimes we have no choice but to fight this crap. Other times we have to get away from it as soon as possible.

However, the more we keep hold of ourselves - our best complicated selves with our passions and talents and foibles and that birthmark that looks like one half of Jedward (but which, you wonder, but which?) - the better equipped we are to escape being utterly consumed by the rage.

On Loss & Chronic Illness - Denial

Content warning for brief references to self-harm, discussion of bereavement and psychological abuse.

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:


For the first two years I was sick, I wasn't in denial so much as ignorant then optimistic. My health was up and down, so I assumed that very soon, things would pick up, and up and up and up. All the strategies I was given were about resisting my illness. Do as much as you can. Keep going. Have a go, even when it hurts. Stay positive.

By the third year, it had gone on too long. The idea that I would not be going to university at the same time as my peers was unthinkable. It wasn't that my academic career had ever been central to my identity before then, but all my other identities had dropped away. My greatest passion - acting - was now impossible. My role in all friendships and within the family had greatly diminished. I couldn't sing more than a few lines. I couldn't make art. I couldn't write stories. I was struggling even to read.

All I had left – and what my parents were most worried about, the one thing, apart from my health, that others asked me about – were my studies. I didn't have anyone breathing down my neck on this, but I felt an immense pressure. If I stayed sick, I was going to let everyone down.

Here are some ridiculous things I did in that third year:

• I went from studying a single GCSE to trying to cram two A-Levels into one year. If you're not familiar with the English and Welsh education system, that's increasing my workload by about five times, without any improvement in health.

• I began to write the story of how I got better. In the past tense. When writing anything was a tremendous effort. Which is why I only used up the first few pages of the lovely new notebook I'd chosen to write in. Such a waste!

• Most ridiculously, I asked my parents for a new bicycle for my eighteenth birthday. Before I was ill, I used to cycle all over the place. I'd had a few bikes before, but never a new one and I had absolutely never bought or asked for anything which I didn't then use. Thus I reasoned, my capacity to balance on a bicycle seat and peddle with my malfunctioning legs would just have to improve accordingly.

All this may sound daft, but I want you to imagine this in a bad movie. A sick girl who has significant trouble walking buys a bicycle because she's determined she'll recover to a point where she can cycle again. She begins to write the story of how it's going to happen. She takes on all the work she needs to get her into university (Cambridge said they'd consider me with just two A-Levels, given the circumstances).

She has to get better. She deserves to! She has hope in the face of dwindling odds. This girl isn't a fool – she's a hero. The final scene of the movie has her either peddling off into the sunset or with a shot of the pristine unused bicycle, propped up against her gravestone.

I didn't die, though my health got much worse and I entered a darker, uglier level of self-doubt. Maybe I was kidding myself about trying so hard, when really I wasn't? Maybe on some unconscious level I wanted to be ill? Maybe I didn't want to be ill but a part of me was making myself ill just to spite myself and cause distress to everyone around me? By this point, I was cutting myself and stockpiling meds. Soon after, I got together with my first husband, who hurt me even more.

.......

On the 26^th August this year, I will have been ill for twenty years. I'm not upset about that, but I've been thinking about it and want to write something about loss and chronic illness. I want to use the Kubler-Ross model of coming to terms with loss which, though imperfect, covers all the bases; the process of denial, anger, bargaining, sadness and acceptance.

Denial is a psychological defense against very difficult facts, but it's almost impossible to sustain on your own. Usually, when a loved one dies, it can take a few weeks at least to fully comprehend the fact - it's healthy the pain doesn't come at once. But sometimes, someone is informed of a death and simply refuses to believe it. This usually lasts moments, or minutes and occasionally a few hours. Then it shifts, because however gently they are treated, everyone around them is contradicting their belief. Abuse victims can remain in denial about the nature of their relationships for years, because there's either no opposition – other people smile and nod when they say everything is fine – or that opposition is discredited by the abuser.

Meanwhile – and this will be a recurring theme as I write about loss – with chronic illness, you can't just come to terms with these facts in one dose, even it is spread out over months. There will be other losses, relapses and complications, - even remissions that stabilise far below the point you hoped for. There may be points where you realise you have to drop some work you're doing, studies or hobbies, a point you realise you can't have the family you'd like or can't play your preferred role within your family. You'll miss events - weddings, parties, Christenings etc. - which will never happen again. You may lose friends, when your  illness gets boring. There are all kinds of ways which you won't get to be the person you wanted to be - not because you chose to be someone else, but because of illness.

Of course, everyone experiences loss, but the loss associated with illness complicates regular loss - if only I wasn't ill, things would be different, maybe this might not have happened, maybe this would be easier. I wasn't devastated by the death of my maternal grandmother last year, but the fact I was too sick to attend her funeral sent me into a couple of months of emotional disorientation.

Fortunately, you don't have to mourn for the whole thing at every set-back, but loss is dark pool which settles for a while, only to be disturbed again; sometimes a mere ripple, sometimes a splash.

After that terrible third year, I never again counted so completely on my health improving, but there would be other times I overestimated my (usually deterioating) health and stamina when I really should have known better, times when I worked on the basis that my good days would be my normal days from now on This would always coincide with desperation, self-doubt and external pressure.

.........

As soon as I started to think about writing about chronic illness and the Kubler-Ross model, I noticed how our culture discourages people with chronic illness from getting to that final phase of acceptance. Our culture actively encourages denial (as well as anger, sadness and bargaining especially). As I say, it's almost impossible to maintain denial on your own.

I generally enjoy my life very much. I'm writing about loss, but loss is part of life and doesn't stop it being mostly great. However, sometimes I'll have this conversation when someone implores me to keep positive. Not that they think I'm not making the most of life, but because I'm not highly invested in the prospect of getting better. I'll hear that I shouldn't “give up” - I should keep hoping for a cure, pestering my doctors for tests and experimental treatments, trying alternative therapies, restrictive diets and so on. I hear this both from other sick people who have got themselves a bit stuck, and from healthy people who really have no concept of how incredibly short life is and how very much shorter life is if you have to rest more than half the day.

However, I have many advantages when I roll my eyes at this. Meeting the disability rights movement made such a difference; it made my illness personal and private, separated out the things I can attempt to address (physical access, social attitudes etc.) and released me from the sense of obligation to fit our culture's model of a deserving sick person.

Some people are much less lucky and get stuck on denial, even after years of illness. A few times, I've come across people who are convinced that they have found the answer and – understandably, altruistically – wish to share the good news with other people. In the worse case, I was put in touch with a friend of a friend, a man in this thirties whose parents were spending twelve thousand pounds a year on a single nutritional therapy regime. Twelve thousand pounds – it crossed my mind that even if this worked and I regained full health, I could probably never earn enough to pay for it. But of course, it didn't work.

He'd been on this regime for a year or so when the therapist used some kind of mystical scanner and declared that the illness had left his body. Completely cured, his body and immune system remained weak and just needed building up again (with this ongoing course of expensive therapy, funnily enough). But as our conversation progressed, I realised that he hadn't really seen much improvement at all; this weakness was basically all the symptoms he'd had before, only with a different explanation.

Someone who has never encountered this might think such a person would have to be terribly gullible, foolish and perhaps a little unhinged. He wasn't. He was a pleasant, sensible father of three who had worked as a teacher before he was ill. He just couldn't see a life where he didn't get well. Given their financial investment, his family obviously had the same imaginative block. It wasn't that he was pretending to be well - he still wasn't able to work or walk significant distances  – but having been told that he was well, he chose to believe it.

I describe this as the worst case because, well, twelve thousand pounds a year. But there have been others and it's always tragic. You generally lose touch with these people, not because of arguments (you don't argue with this) but because it becomes impossible for them. How can you face people around whom you evangelised about a cure, when two or three years later, you are still demonstrably unwell?

But of course, in terms of stories, our culture loves this stuff.  Illness is something to be fought - Beechams will help you fight a cold, David Bowie just lost his battle with cancer. This is all denial; There is no cure for the common cold - if you have anything but a mild cold, you will feel rotten and infect people around you. Whatever courageous attitude Bowie adopted towards his illness, he died because of a great collection of circumstances which amount to bad luck - had he survived, he wouldn't have fought it off, but merely been luckier.

Hope is a great thing and looking after one's health is entirely sensible. Placing faith in the impossible (or even the rather unlikely) is a waste of life.

.......

There's one more point to be made about denial, which makes it unique among the phases of grief: other people will try to get in on the act for sinister purposes. 

Naturally, some folk do go into denial about the deteriorating health of a loved one. They desperately want there to be a simple solution, and for things to go back to normal, so they pretend that's going to happen. This can cause a lot of stress, but it's unlikely to last long. 

However, the very first thing a person does if they wish to bully, undermine or control any disabled person, but especially one who is sick with subjective unseeable symptoms, is to cast doubt on their impairment, speculate that they could try a bit harder, that their account of things is inconsistent, that maybe there's a part of them that is seeking attention. 

And these two things – someone profoundly distressed about another's state of health, and someone exploiting the opportunity to exert power over them – can be easily confused, with disastrous consequences. When friends, family, quack therapists and occasionally even medical professionals get up to that crap, a sick person can be easily dragged into that very dark and ugly place I described earlier (Is it me? Am I doing this to myself?).

Again, this cruelty is in our culture. This is what the benefits agencies do – they endlessly question perception and imply dishonesty in rock solid cases. This is what newspapers do when they complain about scroungers. People who do this to their own family and friends aren't in the least bit original, but their message must not be mistaken for love or concern. This is all about power. 

My top survival tip – not just when it comes to chronic illness, but life in general – is to trust yourself, your feelings and your experiences. This doesn't mean experiences mean what you think they mean (honestly, it was just a satellite – if you look at the sky for long enough, you'll see dozens), or that you should act on all your whims. The mind can play tricks on you, and you may have irrational thoughts, but you almost certainly do know roughly what's going on with you.

On some level, I knew I wasn't going to ride a bicycle again any time soon. But I was trying to defy my own reality. When others attempt to defy your reality on any matter - not to merely disagree with you, but suggest that what you feel is not what you feel -  you need to give them a very wide berth.