Wednesday, March 09, 2016

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.