Tell me something positive…

22 01 2014

One of the realities of living with a chronic illness, is that it never goes away. It’s never far from your thoughts, as its always affecting some part of your body. Much of your day is taken up with making accomodations for your pain and fatigue; gagging back multiple different poisons in the hope that one of them has the tiniest positive effect on your body while pretending the side effects arent potentially worse than the condition it’s meant to treat; visiting numerous different consultants who never seem to communicate with each other; GPs; nurses; physios; OTs; social workers… the list is endless and so are the rounds of appointments. I can sometimes go a whole week with no appointments, and then I’ll have three or four, in the one day if I’m lucky, on different days of the week if I’m not and this often happens every week, not just once every 6 months. Try fitting that in around parenting a 4 year old, caring for my aged grandfather (and taking him to his hospital appointments), studying for a law degree, being a partner, being autistic on top of all that, with no respite for my overwhelmed mind.

And through all this I’m expected to keep quiet about it all. I’m expected to remain cheerful and not talk about my day because it upsets others. I’m supposed to pretend my life isn’t one big pile of shit because other’s are uncomfortable hearing about it. I’m supposed to slap on a fake smile to keep those who aren’t ill happy, because they don’t want to hear about my day when they ask.

Well here’s a word of advice to all those of you who think the hardest part of their life is having to listen to me recount my day which isnt always very positive, don’t fucking ask how i am if you don’t really want to know.

I’m not going to lie to make you feel better or less uncomfortable. I don’t set out to make you feel uncomfortable when you hear about my day and maybe you need to look at yourself and the privileges in your life when you do feel so uncomfortable about hearing about my day that you want to shut me up.

I’m not going to pretend that your arthritic big toe is the same as having every joint and organ on the right side of my body so painful codeine no longer touches it, while still ending up zombified and incapacitated by the sedating effect the medication has. I’m not going to compare that one day you took off work with diarrhoea to my daily 4am crippled-in-pain wake up call hoping i can make the loo in time without shitting myself, and then having to go every 15 minutes for the next 6 hours. I’m not going to think theres any comparison between being tired after a day at work in a cosy wee office is anything like full body fatigue that *never* goes away whether i’m active or not. I’m not going to agree that your smokers cough is anything like the 6 week flooring I get when you splutter your germs all over me because I have a suppressed immune system. I’m not going to contemplate that your vanity about wearing reading glasses is anything like my fear of losing my sight in one of the most prolonged and physically painful experiences I’ve ever had.

I’m not going to say something positive about my day because you don’t want to hear the reality of how my daily life is – mostly because there are huge swathes of my life where there is nothing positive to report.

I’m sorry I cant be the person you want me to be.

I’m *more* sorry I cant be the person *I* want to be, but I often think that doesn’t cross your mind.

I’ve lost count of the number of times people I care about and respect have asked me why I “want” to be like this, as if having a chronic illness is a lifestyle choice I made. I’ve heard this from family and from professionals with alarming test results in front of them. Nobody would choose this as a way of life. Nobody would want to have to justify to society their existence, be that because the medication made them obese, or causes their long thick hair to fall out in clumps. Nobody wants to have to justify why they’re not working, whether or not they are claiming social security. Nobody wants to have to justify the reason they take one parking space over another despite “looking normal”.

I shouldn’t have to justify why I can’t be positive all day every fucking day.

I wont pretend it doesnt cut like a knife every time someone asks why I cant be more positive about my life. It’s as if they just ignore what I’ve said. And the funny thing is, I’m not depressed in the slightest. My mental health is doing surprisingly well. It would be a cruel twist of fate for that to pack in too. Yet it would be more acceptable for the people I know, friends, family and medical professionals, to attribute my negativity to a mental health condition rather than actually admitting that at times, because of a (series of?) chronic physical illnesses my life is shit, and that there is nothing positive to report.

Well I’m not sorry for the way I am. I’m not sorry for being negative about how my life is. You wouldnt get a metre in my shoes let alone a mile without moaning about it. I’m still fucking alive in a society that would rather I was dead. How’s that for positive?

***this was in response to a phone call with my mother and seeing someone post something I connected with on the abledpeoplesay hashtag on twitter


Who is doing the diagnosing Esther McVey?

4 04 2013

This is the video of Esther Mcvey on Channel4 News discussing DLA to PIP.

McVey seems somewhat flustered, unable to articulate clearly her point, unaware of the realities of the policy she promotes, obsessed with asking Krishnan Guru Murthy to “hang on a sec” and generally talking rubbish.

Much of the online outrage at her talking rubbish, was at her statement on how the government perceive themselves to be treating disabled people “generously”.

But this isn’t the bit that concerns me, neither does her claim of governmental generosity (although if she’s expecting any kind of thanks or praise she can think again)

No! A small throwaway sentence at 3 minutes 14 seconds in, reveals the truth behind the governments disability assessment processes. DIAGNOSIS.

Yup, that’s right the Minister for Disabled People, Esther McVey actually says on prime time national television (3m 14s in if you want to double check) “If we can actually diagnose individuals through their historic data and their medical data…” Think about that for a moment. Think about the sheer arrogance of that statement.

If WE can ACTUALLY DIAGNOSE INDIVIDUALS through their historic data AND their medical data…

Now what set of well trained professionals do we expect to have the knowledge, skills and experience to be able to undertake such an important, life saving task as diagnosis? Who are “we” that do the diagnosing?

Prior to that statement McVey is discussing face to face ATOS assessments and for those with degenerative conditions, paper only assessments. So could “we” be the ATOS IT system or the DWP decision maker? Are they now responsible for diagnosing conditions? Are we now to send all our medical data to a civil servant for diagnosis? What training will this person have in identifying conditions and appropriate treatments or supports?

There are times I experience exacerbation with the medical professionals I see, where I wonder if an average bloke on the street wouldn’t do as good a job, but would I put my life and future in their hands? Would I hell!

I can imagine any official response to McVey’s statement being along the lines of ‘slip of the tongue’, ‘wrong choice of words under pressure’ but this is a professional woman, employed in her ministerial role to be able to clearly and confidently articulate the governments position and to be able to do so under pressure. With this in mind her choice of words regarding “diagnosis” is telling. I’d place bets on the use of diagnosis being a commonly used term in government corridors and meetings. Through the week McVey had already outraged others by talk of “healing” people and now these ministers and MPs, these jumped up civil servants, pen pushers and office workers, actually believe they are responsible for diagnosing people who ALREADY HAVE MEDICAL DIAGNOSES.

Diagnosis and cure by the government with their policies? HALLELUJAH! Praise the House of Lords! It’s a miracle.

You don’t get DLA based on just filling out a form. You need to provide contact details for ALL the professionals involved in your treatment and care. Your GP, your consultants, any nurses, care workers, support workers, social workers… If you can plan in advance and send in their reports with your application, it makes the process somewhat easier but decision makers are still meant to confirm the accuracy of the reports themselves. Decision makers are not there to diagnose a condition and I doubt their abilities to treat or heal conditions either.

So what exactly are the government planning? We already know what they think of the NHS. We know that in time, treatment and diagnosis will only be for those who can afford it. We know that people unable to work through sickness or disability are already labelled “work shy scroungers” and that society has cruelly turned on them in an attempt to cover their own backs.

Is this the first publicly admitted sign of a government led two tier health system? Those who “strive” get doctors and medical diagnoses at a price but those who cannot get an ATOS/DWP penpusher diagnosis? I know, I know all a bit woooooOOOOh conspiracy theory but what else are we to think when a government minister is on national news saying THEY will diagnose?