Content note: mental health, self harm, suicide

Today is yet another well meaning but a bit too cosy to be realistic mental health initiative, #timetotalk. It is admirable yet it doesn’t quite get across how hard talking is. It’s not just stigma, it’s the vulnerability. It’s terrifying to talk about mental health sometimes, to open up and to admit you can’t cope, that you hate yourself, that you hurt yourself, that you want to kill yourself. This is something campaigns like this just don’t quite convey. It’s not as simple as having a cup of tea, it’s opening up at your most vulnerable to people you aren’t sure will understand.Even if they do understand it’s terrifying, it’s like being naked, stripped of any outer shell. As if your skin has been rubbed raw and you’re about to face a salt mist. It’s that feeling of being exposed to something raw and painful. Can you really cope with someone you love telling you they harm themselves or want to kill themselves? Because that’s a possibility. Sometimes you won’t be able to help and it can be painful, frustrating and terrifying. If you can’t cope with that then be careful because if you open up the emotional floodgates of someone vulnerable they might not be able to close them. You might trigger painful thoughts, feelings, harmful behaviours, a panic attack. There might be arguments, tears, fights.

Yes it’s admirable to break down stigma and talk about mental health, it shouldn’t be a taboo subject that you avoid talking about; but at the same time some people just don’t want to or can’t talk bout their mental health sometimes. Sometimes it’s too painful, it can trigger symptoms such as an urge to self harm, suicidal ideation, panic attacks – a whole range of things. So please tread carefully and respect people’s boundaries, if they don’t want to talk don’t make them.

It’s too easy to feel guilted by cries of  ‘go on you’ll feel better if you talk about it!’. It can be dangerous to talk if you are not in the right environment, if you don’t feel safe. Sometimes you just can’t talk, I have terrible moods where I can barely string a sentence together, the depression is just so bad I just don’t have the mental and physical strength to hold a conversation.

So whilst I applaud the aims of the campaign it’s worth bearing in mind that sometimes talking can be hard, impossibly hard and it can be dangerous to pressurise people into doing something they feel uncomfortable with.

As well as talking you must respect people if they choose to remain silent. No one should be pressured, directly or by more subtle means of emotional manipulation (for example things like ‘you’ll feel better!’, ‘it’ll be good for you!’ are not always as innocent as they seem) into talking. A five minute chat isn’t a pat on the back moment I’ve done my bit thing, talking about mental health issues can be a very, very hard thing for some people and won’t be anything like a nice cosy chat over some digestives.

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‘Passing’ as not disabled & all the conflicting emotions it brings

Society has such a narrow view if disability I’ve found it hard to identify as disabled, despite the fact I live with two chronic conditions that affect my ability to live my life ‘normally’ which fits the definition of disability used in UK law. I feel trapped sometimes.

I have been insulted for calling myself disabled as I am ‘not disabled enough’ and this is apparently an insult to those more disabled than me.

I try to fake it as ‘normal’ and suffer burn out , emotional & physical.

I don’t ‘look disabled’ according to the dominant very narrow view if disability. In the past I have used mobility aids such as sticks & a wheelchair but I don’t need to at the moment. I am a lot healthier than I used to be and aware of the privilege this affords me, but I’m still far from what I’d term ‘abled’ or ‘not – disabled’.

I can’t cope with a 9-5 day, my sleep pattern is fucked & I nap for about 2-3 hours everyday, some days where I have something special to do I can manage a ‘normal’ day but I can’t keep it up on a regular basis & I usually pay for it afterwards, having a few days or even weeks where I am much more fatigued and achey than usual.
In many ways passing as abled is a privilege, I escape the abuse aimed at the visibly disabled. Yet it has it’s problems, if I need extra help with things I often face a lengthy explanation of my health (which isn’t fun as it can bring up a lot if emotions I find hard to deal with especially as I have depression too & emotional resilience is not my forte). So often these explanations end up with a realisation I don’t fit into any if the neat categories of ‘disabled’ we (by ‘we’ I mean  our predominantly abled society in general) are used to dealing with and  thus no one is quite sure what to do with me. The irony of this is, I don’t suffer from any rare conditions; I have m.e/cfs and depression,  illnesses that affect millions in the UK. Yet my history of support, from my interrupted and inadequate education to troubles with employment has been one of ‘falling through the cracks’, with viewed suggestions my situation is  rather unusual and that people can’t possible be expected to deal with it and oh why can’t they just build a ramp and be done with it?  Very few professionals meant to support me have had any clue what to do or have been able to do anything within the systems imposed upon them. So as my health has improved I’ve often found it easier to just struggle on as a ‘normal’ person than to navigate a flawed support system that seems confused by me and that requires extra work from me requiring time and energy I just don’t have. In university it was often easier to struggle with no support than to tire myself out chasing up support with all the extra forms, meetings, phone calls and emails this entailed.

Under Attack

In the last few years I have felt increasingly under attack as someone with invisible disabilities. The war on ‘benefit scroungers’ and the cuts to the welfare state are targeted at people like me. People who claim benefits but are seen down the pub, or walking down the road. We can’t possibly be deserving, after all we ‘look fine’ don’t we?  This is especially troubling when mental health is brought into it and people start spurting out all that ‘just pull yourself together’ crap.

This relentless attack on disabled people has a horrible affect on my mental health. I’m afraid for my future, I’m scared to admit to people I’m on benefits, that I’m ill. I worry that if I fall out with someone they could report me for fraud (99%of claims to benefit fraud hotlines are malicious). I see friends and family going off into the world and having careers, I fear I’ll never have a career, certainly not one I can support myself on. I know that I an intelligent , that I have worth as a person, that I have skills but I know that capitalist society doesn’t value them, I can’t work enough to make money so why should I be educated? I feel wasted and washed up, stuck on a scrap heap and I’m barely 30. All that hurts, really fucking hurts. Reading things like the hashtag for benefits street or any other dehumanising propaganda shit they disguise as ‘media’. Politicians saying you’re ‘not worth the minimum wage’ , the endless attacks from the DWP about ‘fraud’, the judgement from strangers who feel entitled to judge whether you’re ‘really disabled’ based on nothing but ignorant assumptions. The pervasive mindset that because I don’t ‘work hard’  I don’t deserve to be supported. I feel like I don’t matter, because I can’t fit into the structures of a world designed around those without disabilities and  I don’t get much of a chance to prove myself, my talents, my humanity. Mainstream political discourse of all directions sees me as either a nuisance or just doesn’t see me at all. Even those causes and movements that pertain to be ‘progessive’ often castigate me as an ‘armchair activist’, ‘not being a real activist’ or ‘just moaning online not doing anything’ because I can’t fit into their structures. Structures I have spent my life trying to force myself into, breaking myself to fit into other peoples boxes whilst they look on & don’t even consider making the boxes fit me.
I feel like it’s giving up too easily to give up on society but in truth it gave up on me.

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Because it’s National Poetry Day 2014, I thought I’d break my blogging silence by posting some of my poetry. And by ‘poetry’ I mean a stream of consciousness of rage and emotion rarely fitting into any neat style, bad spelling and all, just raw words spurting out. So three little poem like creatures:

The Flood

It comes up from nowhere
Wells up breaches all my defences
Deluge inundation
I’m saturated, heavy with sediment
Not life giving
But stagnant red

Targets

I used the word existential
Said I must be intelligent
None of your therapy
Got me out if this predicament
Said I wasn’t complying
When I just wasn’t lying
I honestly just couldn’t see
Any reason logically
Any event, any thing
That had me feeling like I did
Even mental illness has to conform
Fit into a small box on a form
In 16 sessions , no more
I see why they call it a revolving door
5 years later I’m here once more

Think I’m just not meant for this world
I see too much, feel too, much get hurt
I try so hard, but can’t describe it in words
It’s in the bit of me that’s primal
Something in here fighting for survival
That predates language & expression & words
So elusive it feels like a curse
That part if the soul, so deep, so old
So much more than I can ever know
I get joy too, but it’s this sadness that shows
That drags me down so far below
Down deep to the centre where magma flows
To the kernel of everything we know

If course I can’t make it easy to explain
Or find a concrete reason for this pain.
You can’t make my soul about targets.

Some Kinda Clarity

As my mind clears I start to write poetry
Blessed relief to feel the words flow through me
After months of a stagnant mind silent inside
A pretence of stability just hiding the misery
Of being cut off from the vitality inside of me
As the fake chemicals reduce , removing the sluice
Letting it all flow loose
Embrace the flood
Renewal – new life from the alluvium
A World springs from the watery nuum
After the flood all is reborn
After the flood creation
Destruction then Personal Cosmogony

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Today is Blogging Against Disablism Day so I am going to participate by writing some of my thoughts, rambling as usual, about invisible disability and ‘passing’ as abled and issues with identifying as disabled when you, to use a much hated phrase, ‘look normal’. I ‘look fine’. I don’t currently use any mobility aids, though I have done in the past. I can easily ‘pass’ as abled and this sometimes makes me feel like I never quite fit in anywhere. I have been attacked in the past, see some of the lovely comments on this post for example, for not being disabled enough and told it’s insulting for me to claim the label and I have questioned referring to myself as ‘disabled'; partly over issues like this. I’m not mentally strong enough to cope with the antagonism so I’d rather be a wimp and avoid it. But according to the UK legal definition of disability, I am disabled. I live with chronic physical and mental illness (M.E/CFS and a chronic depressive disorder) that have a substantial impact on my ability to live my every day life. I feel that maybe some of my reluctance to use the term has been down to internalised disablism and trying to convince myself that I won’t be ill for ever and one day I’ll be ‘normal’ again. At the time of writing I have been ill for the best part of twenty years, the majority of my life, so I’m not quite convinced of the temporary nature of things and have pretty much accepted that my chronic illnesses are a disability that will probably be with me for the rest of my life, though they may have good and bad patches. I also live with a lingering anxiety that I am seen as a ‘dirty scrounger’ or ‘malingerer’ or ‘work shy fraudster’. This has only increased in line with the governments attacks on disabled people and the benefits systems well as the media complicity in all of it. There is a general idea within society that ‘you can tell’ if someone is ill or disabled and those who ‘look fine’ are fine. There is a very narrow understanding of disability in society, which for the most part excludes invisible disability. Conditions such as depression (check), M.E (check), bad backs (I’m ok on that one so far) and other invisible disabilities are often used as journalistic shorthand for ‘faking it'; often accompanied by ‘scare quotes’. In the popular imagination of of modern Britain people with invisible disabilities are just ‘putting it on’ and waiting for a huge benefits cheque whilst we lounge around our mansions watching massive flat screen TVs, fabricating imaginary medical conditions to con the ‘tax payer’ out of money. It feels like I see two sides of disablism; I am privileged as I can appear abled so I am not subject to abuse for appearances and as I ‘look fine’ I hear things people wouldn’t say if they knew about my disabilities or if I was visibly disabled. Yet at the same time I face a different sort of prejudice from being invisibly disabled, one of disbelief. I look fine so I must be fine. I don’t need a ramp to access anywhere so everything’s ‘accessible’. I suppose it feels like I experience disablism from both an outsiders and insiders perspective, or from some muddled area in-between.

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So I turned 30 recently. I’ve never really been a fan of birthdays as they tend to remind me how long I’ve been ill, around 19 years now, more than half my life. Time is a funny thing and it seems even more melancholy when you’re ill. All those milestones everyone assumes just happen often don’t, or they happen in convoluted ways. The whole school uni job career marriage kids thing that seems so ‘normal’ becomes impossible or at least very tricky. You see everyone else rush off and do all these things almost by default and you’re just stuck. You feel like you’re in stasis but time is still passing, you’re getting older, the world’s going on and on but you’re just there; existing in a wallpapery sort of fashion.

Things start off with everyone saying stuff like ‘when you’re better’ then after a few years you realise that might never happen so people stop mentioning it. Due the cult of misguided ‘positive thinking’ in our society things like ‘well what if I never get better?’ are often ignored and you learn to not mention it or at least not mention it too much. You feel like you can’t really discuss it openly and it’s certainly not accepted to discuss it at the marathon lengths others discuss pensions, property and career ‘ladders’ and all the other more acceptable ‘worries about the future’ stuff that eats up column inches and politicians pander to. You’re supposed to have ‘aspirations’ and plans not be worrying if you can cope with the basics of everyday life. The whole planning for the future thing is even more terrifying, it’s not about mortgages or kids or any sort of bloody ladder or long term investments or upsizing or downsizing; it’s about ‘what the hell am I gonna do if I can never work enough to support myself?’ and ‘how the hell am I supposed to look after my parents when they get older if I can’t look after myself?’. On the plus side the likelihood I’ll ever earn enough to even start paying off my student loan is slim.

It seems this positive thinking lark is often for the ease of the people around you, avoiding facing up to the harsh reality that life can sometimes be utterly shit. I’ve always been known as a bit if a gloomy soul, maybe it’s because I was ill at a young age? Or perhaps I’m just naturally miserable and Eeyoreish. The donkey is wise indeed:
“Nothing, Pooh Bear, nothing. We can’t all, and some of us don’t. That’s all there is to it.”.

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