The chronic illness Christmas card paradox

I received a hand-made Christmas card from a friend I haven’t seen for ages. It gave me such a lift.

Handmade card from Glenys

Enter a caption

Now I find myself hopefully checking the doormat every day during the run up to Christmas.

Being chronically ill means we’re often lonely. We’re feeling separate from the world that we used to move around in. Every day I check the doormat because a card sitting there would be such a wonderful lift and would help me cope with the long symptomatic Groundhog Day stretching ahead of me. The thing is, it’s hard to write cards when you’re chronically ill. Using what little functionality you have to do so means you can’t do other things. Which is the same for everyone of course but when it comes to illness it’s not about losing time it’s about losing functionality to do something really key, like being able to eat dinner. And whereas missing out on basics like eating isn’t the best for healthy folk, it’s much more severely impacting on an already malfunctioning body.

From a healthy person’s perspective, it’s not that they’ve consciously decided not to send us a card any more for Christmas, birthday or whatever the occasion may be. Well, okay, for some people it might be. It’s not an unusual human response to think that they’re not going to send cards to people who don’t send cards to them, but mainly it’s very usual to not understand what it’s like to be chronically ill.

Being absent from friend’s lives makes us fade into the background because they have other friends they see regularly. Whereas for us, well, we don’t generally get to see our friends. Travel is erm, difficult (one heck of an understatement, I know) so we see whoever we actually live with… and medical practitioners. (Sooo many medical practitioners). Oh and walls. And ceilings (those of us with Dysautonomia tend to know some of our ceilings in quite a bit of detail)! We don’t tend to get to see anyone else. So the friends we haven’t seen for years can be just as important to us now as they were back when we were able to see them in 3D. They do not fade into the background because our foreground is mostly illness, they stand out in the bright and colourful areas that we like the most.

Potentially a healthy friend and a chronically ill friend can perhaps feel very differently about each other. And it’s hard to feel ourselves being faded from their main friend space when they are often still our main friends.

We can’t help hoping for indications through the post that maybe they haven’t forgotten us either, that even though we are ever-absent from their lives that they still somehow care meaningfully about us.

There is a paradox when we make that massive effort though… “I’m determined to write cards this year…” knowing full well that we’re going to make ourselves more ill by doing so: the cards that plop onto the doormat are more often a response to the card we sent rather than something that would have been posted otherwise. So then all that effort brings us a bitter-sweet moment. A card that is meaningful to us and yet never would have arrived if we hadn’t managed to send one ourselves. We learn that when we can’t write cards there are very few people who will still remember us regardless, but we push ourselves every year because we want to send people some love. We don’t write cards to receive them, that is most certainly not the point. We try to write them because our friends mean so much to us. It’s human to feel somewhat bereft when it appears that regard between friends has become imbalanced and yes it’s not actually about cards at all, despite how we tie ourselves in knots trying to work out if we can physically afford the impact from writing them. It’s about connecting with friendships at meaningful times. About feeling loved and included. That we’re still of some importance or significance to them. And it’s about feeling a little less alone at a time of year when loneliness can be most difficult.

In the end we have to be kind to ourselves. If it’s going to reduce our functionality to the point of being even more impaired in meeting our most basic needs then we shouldn’t be pushing ourselves to do it. The reality of not receiving any festive cards is an extra sadness in the overall cruddiness that is being really ill all the time, but we really need to manage our health. Fortunately our pals who also happen to be fellow patients totally get it, we support each other and reiterate our friendships online. Thank goodness for the internet! Though we still try, and each year some of us will succeed in writing a few cards and asking someone else to get us stamps and post them for us.

Interestingly, I find that my doormat is more likely to be graced by completely random arrivals that have nothing to do with yearly events. These are perhaps the most beautiful and lifting kind. When someone has thought of you just because they have, not because you’re on a list. The arrivals tend to be from a few astoundingly thoughtful friends who I either rarely see or have never even met in 3D. These are the heartwarmers. The ones who make us smile just by thinking of them. They are most commonly fellow patients who understand in depth what living with chronic illness is like but who send something because of the love in friendship, not because of the illness we might share (even when what they send may in fact be totally related to our illness, and is super thoughtful and aware because of that too). These arrivals are overwhelming because we know how much it has cost them to do this, and they chose to do it anyway. Love is priceless.

metal straws

Like these metal drinking straws sent to my by ‘The Princess in the Tower’ so that I can still get some enjoyment from a cup of tea when I cannot raise my trying-to-faint head.

The other arrivals are from that rare breed of healthy friend who sees the health stuff, does their best to understand it but still sees us in here as well. We’re not just a walking illness to them, we’re a friend they love. And because they love their friends, seeing us so ill pains them terribly. But seeing us in here too, gives them hope and helps them cope with the illness stuff. They have to keep their distance to cope, but they don’t stop caring. I don’t think they know just how rare they are, many patients can count these friends on less than one hand.

Contact from those who still genuinely know us and who handle the illness that comes with us as best they can (effortlessly, in the case of fellow patients) means more than a token reciprocal card. People are insanely busy at Christmas. We get forgotten because they are buried in Stuff and they don’t actually see us in 3D. But those blanket text messages and occasional private social media messages that we receive instead mean the world to us. After all, we do the same. It’s better for our health to do it that way and we know that our sentiments are no less for having sent them out en masse, so we know that receiving friends’ messages like that are just as genuine. We may not be able to hang them up and look at them from wherever we are stuck dealing with symptoms that day, but they warm our hearts nonetheless and that’s way more important than warming our doormats.

The yearly paradox persists though simply because it’s nice to be able to send cards to the people we care about. To show we are thinking of them and give them something they can put up in their home instead of read once on their phone. We’d like to be able to be a bit more present in their lives that way. And we’d like to experience being on the receiving end of that, too. Let’s try to be kind to ourselves and allow us to send the messages to those we love in lieu of writing symptom-amplifying cards, or sending a selection of carefully chosen emojis or a voice message in the case of those patients who experience enormous impact from using their hands. Says the hypocrite sat here surrounded by cards that I hope to write.


Every year. <headdesk>

Happy festivities to you all whichever they may be. Be kind to yourself, there are people out here wishing you well and who are dancing the paradox with you.


CRPS Awareness photo challenge: time

Photo challenge: The biggest roadblock in my life other than pain.


Suzy's photo challenge, 2015, day 16



I have limited activity per day re pain management.

I have limited activity, functionality, independence per day re the worst of the Dysautonomia symptoms.

I have limited ability to think, process and get brain stuff done because when I use my brain I can only do so for a while. Then it falls over and stops functioning and I’m blooming useless until it recoups. How long that takes depends on multiple variables.

With pain management and brain time it is the unexpected opposite… use it and I lose it. Every time. Though there’s no guarantee that I’ll have any type of functionality at any given time either .

So time when I’m able to think and do is so precious because of its rarity and fleetingness.


Introducing myself….

Witch on the PS3

Hi, I’m a witch who plays on the PS3 in between bouts of looking spooky on the doorstep and handing out sweets to kids dressed up as skeletons, pirates, cats and witches…. Oh wait, no…. sorry that was laaaaast night. Doh!

Let me try that again….

From my Orange physio' walk last November!

From my Orange physio’ walk last November!

Hi, I’m not usually hanging out on my doorstep with sweets on offer (although sometimes my neighbours get given surplus home-grown beans or strawberries 🙂 ). The fancy dress comes and goes – I am a fan of silliness and laughing. 😉 …..

I’m a Tai Chi student, an online advocate and I yearn to paint again. I’m learning Kung Fu even though I’m disabled (thanks to my fabulous teacher) and I have a very active mind so my To-Do list and Give-It-A-Whirl List are pretty long and varied. I enjoy creating and I love learning. I am more determined than I thought I was but perhaps that’s because I have some really strong focuses in my life now, reasons to battle onwards. I have too many plates spinning at any given point in time and that is because I don’t like it any other way! Without plates spinning in my life I feel like I’m missing a trick somewhere, that I’m not being all of the ‘me’ that I can be!

Life is for living, and giving, and sharing, and loving, and learning, and being and sooo much more. I also have oodles of inner strength as it turns out, which is helpful! I love laughing. I love pretty much everything and everyone most of the time. The world is pretty awesome, and there’s good everywhere when we get used to looking for it. One of the best things in my life is tea! 😉 My boyfriend (aka Magic Dude) fortunately takes all of my facets in his stride. His laid-back attitude, big heart and sense of humour serve him well. I also talk a lot. (See how awesome Magic Dude is for coping with me? 😉 ).

The disability that I have is CRPS. That’s a ludicrously high-level pain condition called Complex Regional Pain Syndrome. It has spread through my body during the 14+ years I’ve had it. But it’s a multi-systemic condition – not just a pain condition. Which means that I also have a dysfunctional autonomic nervous system (automatic processes in my body are not working properly, like heart-rate, breathing, digestion, circulation), a compromised auto-immune system, a wonky (medical jargon there 😉 ) central nervous system (I sometimes get tremors and twitches, I don’t realise that bits of my body are sometimes not where I’d like them to be so I tend to spill tea down my front a lot!), and I have big problems neurologically (brain fog a-go-go) which varies (I can be incapable of understanding basic spoken words if I am emotional, stressed or burnt out, or I can write an intelligent research paper when the symptoms are less). In fact it all varies, nothing is consistently severe or gentle, all of it is changing all of the time.

November is CRPS awareness month and the awareness ribbon is orange. So I’ll be donning the bright orange coat again this month and seeing if I can meet some of the November challenges from WEGO Health’s ‘National Health Blog Post Month‘ and Mandy’s ‘A Day in my Life Photo Challenge‘. Let’s have some fun! 😀

Orange for CRPS / RSD

Thoughts on the international disability access symbol

There has been some talk of late about the international symbol of disability access…


We all recognise this, right?

It’s a symbol that everyone can understand without the need for language. We all know that this wheelchair symbol does not mean ‘us’ unless we are disabled. So these symbols get used in many countries to point out disabled-specific facilities such as parking spaces, wheelchair accessible toilets, alternative doorways for the disabled, safety ‘shelter’ areas in multi-storey carparks for those who cannot take the stairs in an emergency, and so on. We all know what this symbol means – there is no confusion over where the disabled facilities are.

Nothing is ever that simple, however.

The universality of this symbol (metaphorically speaking, although aliens may well need disabled access too 😉 ) means that over time the association has been less about the facilities it was intended to represent and more about the ‘disabled’ it is now generally (mis)understood to represent. The repeated associations every time we see it mean that the symbol itself has affected our concept of ‘disability’ – Disability means being in a wheelchair. Being in a wheelchair means that you are disabled.

But the reality is that only 8% of disabled in the UK use a wheelchair.

Yes. You read that correctly…. 8%

So, yes, that means that 92% of disabled people in the UK are not in wheelchairs, and yet the symbol is now so entrenched within our cultural understanding as representing ‘the disabled’ that it’s hard, for those not already in the know, to figure out what on earth those ‘disabilities’ might be.

Assuming that a symbol for a whole population such as ‘the disabled’ is acceptable when it only represents 8% of that population, then other 8% alternatives should also seem completely acceptable to us, right??

Let’s see now…. well…. Age UK’s 2013 report of the UK 65+ age group shows that…

8% are black and minority ethnics

8% have no religion

8% have definite major depression

8% have gone without food to buy christmas presents

an estimated 7% have faecal incontinence

So, by the current disability symbol way of working we could safely represent all older people living in the UK as black and ethic minority atheists with mental health issues, a mysteriously pooey scent and a penchant for gift-giving.




Because the disability symbol was never about representing “disability”, it was about letting people know where the disabled facilities are.

So what does this mean for the other 92%? And what about the part of the 8% of wheelchair users who can stand for a time? Indeed keeping muscles from wasting (atrophying) is oh-so important for those of us lucky enough to be able to do so. What are the responses from the general public when a wheelchair user walks to the back of their car to get their wheelchair out? Or when someone on crutches parks in a disabled spot? Or when someone who ‘looks’ healthy parks in a disabled spot and walks to the shops? What indeed? How is the wider population able to interpret this as within the scope of disability when they have the concept of the 8% in wheelchairs as representing us all?

How indeed.

The UK description of disability, as per the Equality Act 2010, is that you are disabled “if you have a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities.”

It is quite clear from this that if you can walk but your lack of arms stop you reaching your cereal in the morning – you are still disabled, if you can walk but you have a tendency to pass out at any point – you are disabled, if you can walk but the type of brain injury you have that means you can’t process information for long without becoming incapacitated…and so on. This description is what can’t easily be put into a symbol, even though it needs to be to redress the erroneous cultural belief that has resulted from the current symbol.

Ask anyone in the 92%, or in the part of the 8% who try to walk when they can. Ohhhhh we’ve got stories we could tell you! About people shouting at us, and banging on our windscreens angrily, and kicking our outstretched painful legs as they walk past. Oh yes, we could tell you so much about what it’s like to not live like the symbol and still be disabled. It’s not pretty.

Concepts got muddled about with the 2012 Paralympics. The disabled in the UK are now fairly neatly defined as either heroes or scroungers. The heroes put on fake legs and win medals, or wheel to victory, or do some kickass volleyball moves whilst sitting on the floor. They officially rock! So the public ‘know’ that ‘disabled people’ can do things, too. The ones that claim benefits are therefore seen as shirking and not trying hard enough. The concept of being disabled as a result of being chronically ill was left out of the politicians’ welfare re-jig and the resulting media onslaught, and only seems to turn up in single case stories in the media once in a while. As is how limited Paralympians can still be in their day-to-day lives. But this conversation can lead many off track. The welfare issue is indeed an issue. A massive one. And it needs to be addressed. But this post is about the symbol that has mistakenly come to represent disability itself rather than disabled facilities. There is talk of changing it to something more positive, but the core issues never get raised. Talk tends to be within the same confines. A mere variation on a familiar theme.

In New York they came up with this…

new NY disabled symbol ..and yes – look at that wheelie go! They are a person, they are living their life, they simply happen to have wheels instead of legs, right?

Uh-huh, you’ve got it! This is all well and good, but it doesn’t address the fundamental perception that disabled people use wheelchairs when, unknown to most people, a massive 92% of disabled people are not the wheelies they are assumed to be. And seeing as 1 in 5 people in the UK are disabled in some way (and that the population mid-2012 was 63.7 million)… that means that 12.74 million people in the UK are disabled, of which 11.72 million do not use wheelchairs.

If you want to redesign a disabled symbol you can ask people what they think, but most people think a wheelchair is representative of the majority. You can ask disabled people but, you know what, we’ve got used to the disability symbol, too and though we want to not be shouted at in public when we are in pain / about to pass out / trying to cope with multiple symptoms at the time etc it is hard to think outside the box when we are in pain / about to pass out / trying to cope with multiple symptoms at the time etc!

How many of us knew how many disabled people actually use wheelchairs? I didn’t. Until I read the Papworth Trust’s 2012 meta-analysis report.

So…. to create a new symbol – look at the facts, look at the figures – who are you trying to represent in the symbol? And by ‘who’ I do not mean a generic stereotypical ‘who’, I mean what types of disability need to be included to make public perception more accurate? Because we have to bear in mind that the symbol also affects the way people perceive disability itself. Personally I’d like to see something like this become the norm…

Disability symbols

It clearly shows that disabilities vary and, crucially, that they are not always visible. It could mean less distress for those of us who do not fit the minority stereotype, and it could improve many many lives by doing so.

One concern might be that ‘anybody’ could then park in a disabled bay, but we still cannot park in a disability space unless we have passed the criteria to be awarded an official parking badge, and the alternate symbol may reduce the amount of hostility and flak the walking disabled have to deal with. Similarly, disabled bathrooms are blatantly designed for wheelchair access, but also very useful for head injured people who need less processing to deal with or blind people who just don’t feel like sussing out a new public bathroom layout and would find it easier to have everything close to hand for example. ‘Disabled’ covers different things which the current minority stereotype doesn’t, and a new multi-symbol could help adjust perceptions to something closer to reality.

What do you think?


Photo Challenge for CRPS Awareness, Day 28

A Day In My Life Photo Challenge for 30 Days Of RSD/CRPS Awareness, June 2013

Day 28 – A picture of your pain hero


My fellow patients are my pain heroes – each of you are phenomenal.

To combine a piccy of my fellow patients means combining varying aspects of life.. some have kids, some have a pet, some spend time connecting with and encouraging others through the woooonderful internet, and more besides. This picture is not what any one of my pain heroes does, but it is intended to represent some of the things they somehow manage albeit in small chunks of activity. And it also represents the lack of ill health apparent to others. Most healthy people would have no idea that anything is amiss in this pic’. All seems well and the girl is even smiling. But we know what the girl in this pic’ is feeling.. the pain levels, the vibrations from the kiddy-feet thrumming on the back of the sofa, the weight of the laptop on the legs, the fact that the superhero suit is round the corner and just out of reach! 😉

my pain hero!

What you, my heroes, deal with day to day is indescribable. And you’re still you. That totally rocks! You totally rock!


Photo Challenge for CRPS Awareness, Day 17

A Day In My Life Photo Challenge for 30 Days Of RSD/CRPS Awareness, June 2013

Day 17 – A picture of something that has made a huge impact on your life recently

Who’d have thought that finding an enjoyable physio’ activity would lead to two national gold medals in Tai Chi at beginners level, eh?! Blimey!

Tai Chi National medals, 2013

It’s made me reassess possibilities with this condition. Yes, I’m useless for, ooohhh, about 87.5% of the time (randomly specific, eh?! 😉 ) but if that were the case, then during that magical 12.5% of physio’ time I can still apply myself and work on improving my body and doing what I can despite my chronic health issues. *And* it’s something that I *love*.

It doesn’t get much better than that! 😀


Awareness ribbons

Remember that post I wrote ages ago about how  many ribbons can happen to represent each of us chronically ill folk?! Well, I’ve got some more to add to my ribbon prettification list now!…

purple-ribbon I now get a purple ribbon for migraines. I like purple! 🙂 But not migraines 😦

Each ribbon tends to stand for multiple conditions and I didn’t realise until recently that this colour also covers my throbbing-head-flashy-light-stagger-away-from-all-light-and-noise issues!

I also didn’t realise that my tendency to migraine over and over (once I’ve had one migraine I’m reeaally prone to them for several weeks afterwards, and the longer it’s been the safer I am) is what is referred to as cluster migraines. I found out during one of my UK disability assessments. So I guess really I should go all out and overboard with colour and add the recently created ribbon for chronic migraines…


Ahhh, instant prettification, right?! 😉

My awareness ribbons



If I could accomplish one thing in 2013….

That’s an eeeaaaasy one to answer!

I’ve hardly been able to write for this November’s writing challenge. Initially because my brain falls over anyway, but then it was exacerbated by the two days of hospital tests which required coming off my meds…. eek! More symptoms to deal with, prolonged period of time for recovery and I’m still not back to my wobbly little version of ‘normal’ yet! I’ve fallen way behind in my studies because my brain won’t work and my body thinks it would rather like to pass out from time to time. Occasionally I’ve managed a blog post, but that’s about it. *sigh* Maybe next year…

When it comes to the writing challenge of the day: what the one thing is that I’d like to accomplish next year ….. I obviously have to first survive 2012! I’ve got a mere one month left to do some serious catching up whenever I can. So my yearning for an accomplishment next year is hanging on a thread surrounded by 2012’s dastardly attempts to thwart me!

I have received my disability forms for the changeover of the UK benefits from the old system to the new get-people-off-benefits-and-back-into-work system. Which we’d all adoooore, right? Working and being ‘useful’ again is central in many of our hearts. A real ‘I wish’. I can’t guarantee being able to do anything on any day, as I talked about in my recent post about health variability. And the trouble is that very few people get support to look for work that they might be able to do from home around their health, oh and the completely inapplicable yes/no tickboxes filled in by non-specialist assessors who don’t know about CRPS or Dysautonomia and who have nowhere on their tickbox forms to write anything about the crucial variability. o.O

If I plan in advance so that I can at least function in the assessment, they’ll tick boxes saying that I can function. It doesn’t matter that it took a week or two of preparation and tight activity control to get there in the first place, and it matters not one jot that it could take me weeks to recover from it. It only matters if I can touch my toes, pick up an object, talk coherently in the appointment etc. I know…. bloody stupid, right?

There is an average of 75 disabled deaths per week out of those declared ‘fit for work’. (Around 80% of disabled people are being declared ‘fit for work’, particularly those with complex or variable conditions). (The assessing companies have a financial incentive from the Governments’ Department for Work and Pensions for each individual they find ‘fit..’).

The UK disabled deaths over a period of a mere 6 weeks matches the number of UK armed forces fallen during the last 10 years in Afghanistan. And that’s just during six weeks, right? …..6 weeks of disability assessments vs 10 years of warfare created the same number of deaths. We mourn our lost soldiers, and rightly so. We don’t mourn the continuing deaths of the disabled. The figures are seen as some sort of farce, like it’s just not really the case. And when people who could be answerable are occasionally asked about it, they say that we’re more likely to die anyway. Just shrug those deaths off, why don’t you? We’re not really people anyway. It’s not like we feel or anything. Right???

Bear in mind this assessment process was declared ‘not fit for purpose’ after the original pilot study, but was rolled out anyway. It has now been distressing vulnerable disabled since 2008. Yes. That’s a lot of dead people. And yes, there’s an avoidance in the UK media about it. Only the Guardian seems to dare to speak out from time to time. Otherwise media mention is generally avoiding the issue, and yep, even the BBC is oh-so quiet about it all. Often various media coverage is a blatant misrepresentation or avoidance of the facts. Like when some papers talk about how many disabled have been declared ‘fit for work’ as if it’s some sort of success story. They choose to not mention that a vast number of appeals go through successfully, that the assessments are often found to be impossibly wrong, and they certainly don’t mention deaths other than as if they are anecdotal one-offs. The figures are ignored. Seen as irrelevant. The support for disabled people is missing. We are irrelevant. Not worth saving. Not worth fighting for. Not worth signing a petition for. (There were twice as many signatures petitioning against the UK animal tuberculosis related badgers cull). Despite the new system being fully opposed by the British Medical Association, no-one gets to hear about it as anything of any import.

It’s an incredibly distressing time for every single one of us who has a disability. We face being told we are fit for work’ when we are unable to do so. And there are a lucky few who get some kind of support to find work that might possibly be viable, but if they haven’t found viable work within a year they are also cut loose. No money. No support. Left bereft and penniless, whilst still trying to function with chronic illness and disability.

I fully expect the assessors to not comprehend my very specialist, multi-discipline progressive condition. So I’ve been trying to re-write some of my ‘What is CRPS?’ page from the blog so that they at least have some information to look at, with the references at the bottom so that they can see it’s legitimate medical science rather than my viewpoint.

I’m so very exhausted. I’m out of steam. Out of juice. Out of brain. Damn well out of nearly everything, including time.

Oh yes, and my disabled parking badge just ran out. Great timing, hey?!

The extra work and stress is causing further flare. Which impacts on my ability to do any small thing for a useful moment or two. So everything takes longer. And I fall further behind. And the stress increases.

I am worried about my studies. Genuinely concerned. Yesterday I told one of my besties that I am concerned that I might fail my course as a result of just not being able to study. I can’t think. My brain has simply not been there. For months. Stupid neurological condition. *grumble grumble*

I’m not allowing any attempts at studying at all until I can get the disability stuff sorted. Disability coherence is too important. But I can’t get my brain to work well enough for it to be anything other than painful slow-going. So I fall further and further behind. I used to be a princess of last minute assignments. Back in the day. But now I have no idea if I can think critically enough to do any studying at some point during a week or month, let alone during a day.

I don’t want to lose this. I am studying this course to help others. I am compiling research to add to the ‘state of the art’ – the current knowledge and concepts in my specialist area. I am not ‘just’ doing this for me. Though I would be so proud of myself for getting through it and producing something useful at the end of it.

Please, please, please, please, please let me be aware again. Let the meds kick in so that I might get an hour or so a week, at least. I don’t want to lose this. It is slipping away from me. I cannot grab to catch it until the disability paperwork is complete. And I cannot complete the disability paperwork until I get a bit of brain time. Round and round and round we go!

So… with everything going on a once, with the disability stuff beginning to get underway for me and all of the awful-ness that will follow, I need to do something for me. That makes me feel like I’m worth something. Valued in some way. If I could achieve one thing in 2013 it would be to finish my course. The course that I scrimped and saved for years to study. That I couldn’t do for years anyway because of my health and then I went and enrolled anyway because the qualification would have timed out. I would have always wondered. I had to try. But I want to succeed. Not like anyone else would succeed, I know I am a bear of very little brain compared to the old me, but to succeed by my modern day standards. To pass the course, and ohhhhhh I want the research to be good. Please, please, please! Let me complete the research to share with others, that could help others. And let me have my one little moment walking across that stage at the end of it all, with a photo’ of me looking self-conscious and awkward with the gown on and a silly grin, so I can look back at and say “Egads, I look awwwful”, but be so proud of myself for getting there in the first place.

2013. I’d like to leap into the new year like a ninja ready for action, but I fear I’ll crawl in by my fingertips instead. 2013, pleeeaaase let me be me, just for a while, let me pass this course and make a useful difference in the world.

<screws up eyes and wiiiiiiishes> !


Sharing of disability articles and information, thank-you, xx

It was gratifying to see my last post picked up on the 8th August by Jane Young at because it is a post which is important to me with regards to the protection of my fellow vulnerable patients.

Thank-you, Jane Young, x

Most able-bodied people in Britain seem to genuinely not realise what is happening to the disabled population and I was trying to inform and possibly even help to redress that balance a little, xxx

British disability benefits, shockingly shameful behaviour

New petition link added August 19th, 2012 (see first links below post), thank-you, xxx

Currently the London Olympics is on the TV all day every day. It’s on the news. It’s on the morning chat programs. It’s everywhere. The games seem to be going well, even the transport system is coping (admittedly this is largely as a result of us Brits being warned that it will be awful so none of us are going anywhere!). This year we also had a royal wedding and the Queen’s diamond jubilee. It’s a year for celebrations. A year to wave our flags and be proud. And yet I am currently torn between ‘joyful Brit’ and ‘ashamed to be a Brit’.

The force that has torn my attitude into two parts is that of the recent undercover insights into the UK disability benefits system. As this information has been popping up online I have been finding out that even friends from overseas are aware of the changes occurring. One person used the word “barbaric” and to be honest… I agree.

The old system certainly did need to be changed. The previous Labour government (left-ish winged) introduced a new scheme in 2008 which they admitted was lacking but that a pilot scheme would be run so that amendments could be made before rolling it out to the rest of the country. Of course you would expect that the election of a different government could well make that journey more bumpy , (current government is now a coalition: majorly right-wing, minorly left-wing), but an economic downturn took the limelight in the news headlines, and somehow this pilot study just got rolled out as it was in it’s raw form.

“Can you hold a pen?”, was the famous question that initially made us all quake in our boots.

“Yes, even if I don’t know what it is at the time/am in the process of fainting/am in so much pain that I don’t really know what’s going on…” were some of our many varied replies. And the ‘yes’ box would simply be ticked.

Here is a link to the directives in which 11,000 disabled per week have been assessed in the light of.

It doesn’t take many brain cells to spot the consistently massive error continuously sledgehammering into our consciousness as we read those directives. Funnily enough, they have been found to be incredibly inadequate (i.e. a completely irrelevant bunch of arse), particularly for those disabled individuals who have conditions which are inconsistent and thus vary throughout each day. There are no grey areas in the form that the subcontractors have been advised to fill out on our behalves. It is black, or it is white. There are no other options with which to answer. So we are either terminally ill or obviously severely physically limited… or… we are absolutely fine and dandy. Oh skippety hop, apparently lots of genuine disabilities no longer exist. We must all be in remission, right? (Did you spot the sarcasm? Sorry about that!) In the light of these directives CRPS is not a disability, nor is any form of dysautonomia, or ME, or CFS, or mental health issues, or…, or………  Simply because we cannot say  “we cannot pick up and move a 0.5 litre carton full of liquid”, but we also cannot say “we can pick up and move a 0.5 litre carton of full liquid”. It’s not rocket science, it’s just that many many disabilities are not a yay or nay scenario. They are a “yay sometimes but with resulting pain and other condition issues, but nay the rest of the time because our conditions are varied and we permanently have to work around the symptoms as well as biological and neurological payback”. Oh, is there not a tickbox for this option? Grrrr.

A black and white assessment of a many coloured disabled population

This new system is costing government and taxpayers £100 million to roll out to all, and an additional £50 million every year in appeals owing to the level of fault in the system. The fault isn’t minor either, around 38% of appeals are successful, and if a professional is involved to shed light on the health of the individual then the success rate is more like 80-90%. This isn’t just hurting the disabled, it’s costing everyone a vast amount of money. Helping people to get back to work is admirable, the main problem is that they are targeting people who really want to work, but genuinely can’t.

The UK definition of disabled (under the Equality Act 2010) is….

“A person has a disability if:

  • they have a physical or mental impairment
  • the impairment has a substantial and long-term adverse effect on their ability to perform normal day-to-day activities”

And just in case that wasn’t clear enough….

“For the purposes of the Act, these words have the following meanings:

  • ‘substantial’ means more than minor or trivial
  • ‘long-term’ means that the effect of the impairment has lasted or is likely to last for at least twelve months (there are special rules covering recurring or fluctuating conditions)
  • ‘normal day-to-day activities’ include everyday things like eating, washing, walking and going shopping”


“Progressive conditions considered to be a disability:

There are additional provisions relating to people with progressive conditions. People with HIV, cancer or multiple sclerosis are protected by the Act from the point of diagnosis. People with some visual impairments are automatically deemed to be disabled.”

I reckon it’s now probably really easy to spot an ‘invisibly’ disabled person in the UK, coz we’re the ones with the expressions of incredulity and abject terror!

Hilariously (?) the voiced main reason for reform was to get those on benefits back to work, and yet there are reports beginning to surface that the replacement general benefit is going to offer less incentive to get back to work than the old versions being replaced.

For those of you not familiar with British benefits, there are politicians referring to a ‘benefit culture’ over here. They are referring to a percentage of society who were raised by parents on benefits, brought up to live supported by the system, and then themselves progressed into a benefit funded life as adults, thus perpetuating the problem. This is a small percentage of society, but one which gets noticed and which the rest of society is not too chuffed about.

Now…the really important bit… …these are people on a low income benefit, (called Income Support for many years and still referred to as such). It is ‘means tested’ (based on your income) and so it exists to support those on low incomes… carers, single parents, refugees learning english (only for their first year), people on parental (maternity/paternity) leave. So you can see how a fraction of people can continue to exist on this benefit for many years. Particularly carers, who do a sterling job for barely enough money to survive on. Not to do the single parents down, of course, just that as a disabled person I have extra insight into the carers life. A small number of people on low, or no, income, however, may have the opportunity to get off benefits but prefer not to. They are the sub-group to which the politicians are referring.

The disabled are not on Income Support. They are on Incapacity Benefit. Courtesy of their being incapacitated. The clue is in the name, see?

However, for many years I have been told that Incapacity benefit does not exist by all sorts of professional people filling in forms for me. It doesn’t always show up as an option on their forms, it just isn’t known well enough and gets missed off the lists. Everyone has heard of Income Support, though. The incorrect assumption is that disabled people are on this benefit. And thanks to some exceptionally poor media reporting, very unhelpful wording and theme-blurring by politicians, the misunderstanding is that the ‘scroungers’ includes most of the disabled.

Pause for perspective….. It is estimated that there are less than 1% of benefit fraudsters, and there are already teams in place who thoroughly, and secretly, investigate those individuals. Additionally, the government’s own statistics show that there are eligible people out there who do not apply for benefits to which they are entitled, either because they choose not to, or because they do not know that they are eligible.

The reality is that whole benefits system is being re-jigged, but the media/politics focus is on (a) the ‘scroungers’ and ‘fakers’ and (b) disability benefits. Unsurprisingly these badly presented and blurred themes have become one and the same in the minds of the general populous, and attacks on the disabled has risen substantially. As if to underline just how much people don’t understand the paradox they are perpetuating, the type of disabled who are bearing the brunt of these attacks are the ‘obviously’ disabled, adding even more trauma and difficulty to their already complex and difficult days.

There have been two investigative programs televised recently in the UK about this issue. They both uncovered the same issues.

First error: hiring an IT firm to do disability assessments. ATOS is a French company with no experience of working with disabilities. As a researcher myself I am all too aware of the dangers of an assessment like this even when it is undertaken by appropriately qualified professionals in the field. At the very least the assessments should be written by top healthcare experts in conjunction with top health psychologists. With the foundation of the project already throwing away all the crucial knowledge and complex ethics understanding which is required, of course it was going to be useless. No surprise there at all. The question to ask is why was there no effort to have any knowledge involved in this assessment at all?

An undercover primary care doctor found that: of the individuals assessed, allowing any more than 12 to 13% to remain on disability benefit would result in the assessor being assessed themselves because this is considered too many! This means that 87% of all individuals on disability benefit are going to be declared ‘fit for work’. Only a fraction of these will get any support.

This directly contravenes the Equality and Human Rights Commission’s (EHRC) ‘article 27’ which refers to work and employment of the disabled. It states that disabled people have the right to employment and that they should not be discriminated against, (for more information here’s the link), but that they are also to be “protected against forced or compulsory labour”. The British government agreed to this, (their one exclusion was with regard to the armed forces, which was challenged by the EHRC). And yet the British government is now openly contravening this across the board.

As many of you will know, CRPS is known in the USA as the ‘suicide disease’.  (I won’t go into why here as it would be a-whole-nother post, but if you want to know more about CRPS please take a look at this page). It concerns me hugely that seriously ill individuals who struggle daily to cope with their conditions will be put through a stressful process which will negatively impact further upon their health. The 87% (or 86% if you remove the ‘fakers’ percentage) declared fit for work whilst knowing that their conditions cannot cope with it are in a terrifying predicament. Particularly if the suddenly absent monetary support requires a number of working hours that cannot be built up slowly and steadily to reduce the inevitable health impact.

For anyone able-bodied who finds themselves in this situation the negative impact on the body is severe, so for someone with a chronic illness…, well, where do I start? Healthy people understandably experience depression under these circumstances. Chronically ill people experience depression, anxiety, fear, even terror because of the inevitable increase in their already severe symptoms. This is particularly the case for anyone who’s disability involves the nervous systems, autoimmunity, neurological deficits, neural rewiring/chemical imbalance, … in fact.. exactly those disabilities which get disregarded by these unthinkably blinkered directives.

Bearing that in mind, parliamentary figures that have recently come to light show that during the three years ending in October 2011, 31 people declared fit for work died during their appeals. However, The Guardian reported that Panorama’s investigation found that 32 people who were pronounced fit for work have subsequently died, not overall, ..that’s 32 people dying every week from January to August of 2011. There is no breakdown of this figure, so we currently do not know how many of those individuals died owing to stress induced health escalations, how many to more direct effects on physical health and how many committed suicide. But the mere existence of a death toll demographic is horrifying enough. Yet the tick-box assessments continue.

As a CRPS patient, suicide is sadly a familiar theme. Severe conditions which are nonetheless ‘invisible illnesses’, do result in suicide when the distressing day-to-day climb steps over into the impossible. Every human being can only take so much, and in the global online community we hear about fellow patients who have had some recent hiccup in their medical lives, (be it loss of meds, a knowledgeable doctor or financial support), and that they chose to step over that edge. Not because they wanted to die, but simply because they couldn’t continue to live in those worsened circumstances.

Many CRPS patients that I’ve spoken to have stood at the edge. To come back from there takes monstrous effort and huge strength of character. Those patients are not weak, they are strong beyond most people’s imaginings. Many patients live their lives with that edge always in sight.

Today I read a comment on an online post about these benefit changes which recognised the suicide risk involved. In response to that was a further comment from one patient who already knew of two young people in their area who had killed themselves as a result of the benefits changes.

Various individuals have started online petitions on the UK government website. I heard a few days ago that these petitions are repeatedly getting hacked and signatory’s names removed. I would like to post a link to these petitions so that you can have the opportunity to add your voice, and may well do so, but I am cynical about whether your voice would still be there at the end petition date. At this point it’s all beginning to feel a little Orwellian. (Later addition to this post: two petitions had finished recently, there is one still open until 1st November. I’ve included the link below so please please add your name before then, x)

Of course the foreign IT company is doing such a grand job of ripping vulnerable people’s lives apart that they have also been awarded the contract to assess with regards to the other disability benefit (Disability Living Allowance). This benefit does not depend on income as it is for any disabled person to put towards travel to appointments, hospital car park costs etc, which is why the amount awarded varies depending on how the disability affects each individual.

The recent media storm where journalists finally seem to be catching on to the idea that people are suffering as a result of this reform has enabled the word to get out, but is it enough? After so long with the general population getting the horrifically wrong idea that the disabled are scroungers, are they really going to take this enlightenment on board? Or are they going to think it’s some sort of ploy by the alleged disabled scroungers?

The media may well slip into silence again as the ATOS assessors are now being asked to sign the official secrets act. Unnecessary on top of their existing professional ethics, and unrequired for the years so far until the recent media nosiness into the behind-the-scene workings. ATOS claim this is normal procedure that’s been in place with other contracts for years, but the key point to note here is that it was not normal procedure for the Work Capability Assessment for years… but now it suddenly is.

Shockingly there is also a dastardly ‘clause 99’ in the Welfare Reform Act which stipulates that before a disabled person can appeal against a Department of Work and Pensions (DWP: the benefits department) refusal for benefit after assessment…. they must first get the DWP to reconsider it. Yes, that really is exactly as it sounds –if the DWP says no, you can ask nicely, but if they still say no then you are not allowed to appeal. No appeal. End of. If the assessor made an error, if your health condition has been misunderstood… tough…. there is no appeal. This was questioned in 2011 and the answer was clear:

“…to ensure that fewer people end up going to appeal and that there are fewer successful appeals, because long waits for successful appeals serve nobody’s purpose.” 

–          Chris Grayling, Minister of Work and Pensions

(Elle and the Auto Gnome says: “Ahem… serves no purpose? Except, of course, that of the genuinely disabled person….”)

Grayling expanded by saying that the intention was to get it right in the first place….

…Erm….is that why they hired an IT firm to do a tick-box version of a really complex healthcare/psych’ based assessment?

We can scream and shout at ATOS all we want, but they applied for the contract and won it. They are doing as requested. The government refuses to make available the full contract. With the Freedom of Information Act in place, this withholding of requested information is concerning, to say the least, but ATOS is doing what the government has told them to. And that is why it is so particularly terrifying.

But multiple charities and voices for the disabled are now finally getting heard above the white noise of ignorance and disinterestedness. It is notable that the British Medical Association (BMA) is now openly against the Work Capability Assessment. But with the assessments running since 2008 and due to end for 2014, what are our chances of a do-over?

What can we do to help these vulnerable people?

Here’s a letter to quickly download and send to your G.P. to ask for their support in opposing the inappropriate WCA, written by the Social Welfare Union,

Here’s the main official e-petition on the UK government’s website:  This petitioncloses on 1st November 2012. It is already number 11 on the petitions list, can we please get it into the top 10? Please ask your friends and family to sign this. It takes but a moment and they will be glad to help someone they, or someone close to them, cares about, x

Here’s the new petition link (added to this post August 19th, 2012) which asks for a more humane system than the one causing 32 deaths per week

I am aware also that DPAC is planning their own ATOS games to coincide with the Paralympics (Mon 27th – Fri 30th August), they have mega respect for the paralympians it is no slight on them, it’s their way of hounding ATOS.



Baumberg, B. (2012-08-07) ‘In defence of benefit take-up statistics’

Begg, A. (2012-08-03) ‘It’s not the benefits fraudsters who are targeted in the media, it’s the disabled’ in The Independent

Blog post on “Benefit Scrounging Scum: life in a broken bureaucracy with a bendy and borked body” (2012-08-03)(two authors, Sue and Kaliya, one of whom is a professional journalist)

Brennan, S (2012-07-31) ‘Sick and disabled people are being pushed off benefits at any cost’ in The Guardian

“Britain on the Sick” by Channel 4’s ‘Dispatches’,

Cassidy, S (2012-08-03) ‘Half a million disabled people may lose benefits under reforms’ in The Independent

Convention on the Rights of Persons with Disabilities, Office of the United Nations High Commissioner for Human Rights (pdf available via the following link…)

Disability and Equality Act 2010, UK Government website (,

“Disabled or Faking it” by BBC2’s ‘Panorama’,

Dunn, A (2012-08-02) ‘Don’t misuse your disability benefits – the DWP might’ in The Independent

Equality and Human Rights Commission, ‘Article 27: Work and Employment’,

Hundal, S. (2012-04-12) ‘EXCL: ATOS forces doctors into secrets act’

Income Support benefit, UK Government website (,

Malik, S. & Gentleman, A. (2012-04-12) ‘Private sector medical staff assessing benefit claims told to sign Official Secrets Act’ in The Guardian

Pollard, T (2012-08-02) Blog guest post by mental health charity ‘MIND’ who are working with other charities and the UK Government to try to make changes to the malfunctioning  assessment procedure

Poulton, S. (2012-05-25) ‘Oh dear, Dave. Now GPs have turned on you. Time for an exit strategy on the disabled, perhaps?’ in Mail Online

Scope CEO Blog (2012-07-30) ‘Watching the dispatches undercover footage’

Social Welfare Union clarification on the percentage of appeals which are successful, 2012-08-10, thank-you, x

Social Welfare Union (2012-08-05) ‘Old debate sheds further light on the right to appeal benefit decisions’

Social Welfare Union (2012-08-07) ‘Universal credit doesn’t help tenants off benefits and into work’

Social Welfare Union, (2012-08-05) ‘New disability tests will ‘cause suicides’ say disability campainers Disabled People Against Cuts (DPAC)’

Work Capability Assessment (WCA) list of tickbox directives,

Other links:

‘Thousands of disabled people have signed an open letter criticising their portrayal as “benefit scroungers” in the British media’ (2012-05-31)