Catherine Hughes

This post was written for the Broken of Britain TBof BTT campaign and appears on their website here.  If you could spare the time to comment on both copies of the post it would be very much appreciated generic cialis.

They call it ‘malaise’, which is defined as a general feeling of discomfort, illness, or lack of well-being. And it’s a symptom of a variety of conditions, including hypothyroidism and metabolic syndrome (PCOS, Syndrome X), which are amongst those from which I suffer.

It’s a French word, which you might translate as ‘ill-at-ease’. Words, you see, are my thing viagra online pharmacy. I’m fascinated by etymology and I’ve been working on expanding my vocabulary since my dictionary-reading childhood. (Yes, really, I used to read the dictionary viagra. On the bus en route to school every day, in the days before I had any inkling of how things were going to turn out for me cialis.)

And yet, I lack the words to express what ‘malaise’ feels like to me.

I could try and tell you about the nausea, which can be so profound that it bypasses the whole notion of vomiting and goes straight to a desperate desire to be deeply unconscious. I could try to describe the exhaustion that has led me, on some days, to get out of bed at around ten, eat brunch and go back to bed around two, get up for some tea at five and be back in bed for eight; days when I do almost nothing but sleep. I could try and put into words the ghastly, hideous feeling of being terribly ill – a sense that I equate to one of being poisoned although, as far as I know, I have never yet been.

Even then, unless like me you are chronically sick, you probably wouldn’t understand. Even if you were able to see how pale I am, often sweaty and clammy, lumbering in my movements and occasionally in my speech . Even if you were to bear witness to the way my hands sometimes shake or the changes in my breathing when I try to quell the sick feeling by sheer force of will and an excess of oxygen generic viagra.

I can, with greater authority, tell you what other people think ‘malaise’ means. I’ve heard all of the following – sometimes from doctors, sometimes from acquaintances – over the years:

“Tired all the time? You just need to lose some weight; get some exercise.” This was said to me at a time long gone when, fighting desperately for my health, I was running three miles every day, unable to control my weight gain even so. It’s been said to me repeatedly ever since.

“Are you sure you’re not pregnant?” Accompanied by a sneaky casting of the eye over my pendulous abdomen, one consequence of hyperinsulinemia. My hysterectomy was performed in 2005 when I was just 35 years old. So, yes, I’m fairly certain I’m not pregnant.

“Everybody gets tired.” Sneer, sniff. “You’d be as tired as me if you had a job.” I have several jobs. I care for four children and I run a household. I help my husband run his business and I am trying to build my career as a writer. You wouldn’t believe how hard I work, whenever my symptoms allow me to, taking advantage of the fact that, for me, writing is an escape (from the chronic pain I suffer following a botched operation) and a catharsis.

“It’s just the menopause. You’re no different from any other woman your age.” Really? The menopause usually starts when a woman is in her late forties or early fifties and some ovarian function remains even after that. I’m forty-one, I have no ovaries, and I can’t tolerate HRT. I’m not experiencing menopause; I’m going through the meno-sudden-standstill. And it is, believe me, a lot more cruel and unusual than nature’s gradual decline.

“It’s all in your head. You need to see a psychiatrist. Take antidepressants and you’ll be fine.” This is my favourite. Over many years of psychiatric treatment, my doctors and I have figured out that antidepressants do not improve my health, they jeopardise it. Not only do I not function at all when taking them, but I don’t care that I’m not functioning. Active therapies are my salvation – writing; singing; talking to a counsellor; hugging my kids as tight as I can.

And finally: “You’re so fat. What do you expect?” I expect respect as a fellow member of the human race. I expect compassion. I expect credence. These things are more common than I once feared but are sadly less ubiquitous for me than a healthy person might expect.

So, you see, ‘malaise’, to me, is more than the word doctors use to describe this nebulous, indescribable – yet potent – symptom that many, if not all, of the chronically sick endure. To me, the word is representative of the scepticism and contempt with which my attempts to explicate my symptoms are often greeted.

The willingness of many people to dismiss and disparage what is, for me, one of the worst aspects of my ill health – it is this attitude that puts me truly ill-at-ease.

I was watching a discussion on Twitter last night concerning disabled people and capability for work.  I wasn’t able to follow it very precisely – because I was working hard compiling a manuscript – but the gist of the conversation lay in a sense of despair that so many people seem to view ability to work as a black-and-white issue and try to insist that the place at which capacity meets incapacity is a straight, narrow, dividing line.

Fitness for work is a grey area, as I have tried without success to explain to the Press Complaints Commission.  The fact that a person is not fit, by arbitrary standards or under medical advice, for work, does not mean that they won’t try and work anyway.  The fact that a person is healthy and perfectly able to work, does not mean that they either will choose to work or can necessarily find a job.

One person with exactly the same illness as another cannot be assessed by the same token.  Every person responds differently to drugs, even before you go so far as to consider allergic reactions and intolerance of certain medications.  Your pain threshold is an individual charcteristic.  The same illness will progress at different rates in different people.  Many illnesses boast a huge range of symptoms, only some of which affect any given sufferer.  Many people, like me, suffer from more than one complaint and the scope for interaction between two or more illnesses is, I would guess, pretty limitless.  A left-handed person would cope much better with the loss of their right arm than a right-handed person would.

Yes, I’m stating the ridiculously obvious – except that it doesn’t seem so obvious to many, many people; those whose hostility towards disabled people is as patent as it is incomprehensible.

Now, I can only speak for myself, but anyone who can add more examples via the comments is very welcome to do so.  In my case, a complex combination of endocrine problems and mental health problems, which were in some ways causative of one another and in other ways completely separate, coupled with horrendous trauma and the development of more physiological disease (cholecystitis and pancreatitis) led me to a place where I could no longer work and was very heavily drugged with medications that altered my personality, so much so that I just didn’t care that I wasn’t really functioning.

Somewhere inside me there was still a spark of the person I had once been and major surgery gave me some respite from one symptom in particular.  I made several decisions all at the same time: to return to work; to end my marriage; to come off those drugs.  The first two proved to be rather hasty.  The last one gave me back my soul.

I got myself a job, telling myself that the more I worked, the easier it would become.  I hid the majority of my symptoms very well.  I loved it, although it meant that the rest of my life suffered as I struggled terribly to hold it down.  Would you take a job that meant you could have no social life; could spend only a little time with your kids; would have to go to bed by 8pm almost every night just so that you could get sufficient rest to function?  One that meant you relied on all sorts of drugs to control your symptoms to an extent at which they could be hidden?

That’s what I did.

But I couldn’t sustain it.  One of my symptoms was the loss of my emotional control, meaning that I cried very easily, often precisely at those moments when crying was most inopportune.  I lived on painkillers and sleeping pills.  Being bullied at work didn’t help and I lasted just six months before having to resign, knowing that my health would suffer even further if I stayed.  I wasn’t well enough to work – but I forced myself to anyway and, in fact, I have no regrets.  I learned a lot, mostly about my own limitations.

At that point, I could have gone back to claiming incapacity benefit, by virtue of rules designed for exactly that scenario.  But I didn’t.  I accepted some freelance work and I learned that, in the privacy of my own home, where my emotional state wasn’t obvious to anyone but me and where I could more easily conceal the dreadful physical symptoms that I had, I could manage to work.  It wasn’t easy, but it was feasible, in the long term.  Just.

On that basis, I have not since claimed out-of-work benefits despite further developments in my illnesses.  I made a couple more abortive attempts to hold down an external job before accepting the truth of my situation and, since then, I’ve tried to do what I believe is best for me personally: I’ve tried to build my own business writing.

It isn’t very lucrative.  I would be better off claiming benefits (theoretically; the government is about to change that) but I choose not to.  It’s the decision that suits all my particular characteristics, peculiar problems, personal situation, and individual strengths and weaknesses.  It might not be the right decision for any other person who experiences the same symptoms as me.  Sometimes, I am not even sure it’s the right decision for me, because it’s bloody, bloody hard and, in many ways, soul-destroying to struggle for self-worth via remuneration in the way I am.

The ability to do some work from home is not the same thing as the capacity to hold down a (conventional) job.  I work on a totally flexible, sometimes part-time (sometimes not), freelance basis.  I have had to ignore chances that I would love to explore, because I’m simply not well enough to either do them justice at all or to balance them against the work (often unpaid) that I am already committed to.  I cannot do an ‘ordinary job’ but I can try to do this one.  Because the two are not the same.

If the definition of ‘work’ has widened so that the ability to do a few (probably mundane yet frustratingly difficult) tasks from home qualifies one as ‘fit for work’ then we’re in trouble.  Because that would mean that hundreds of thousands of disabled people, including those profoundly disabled or even terminally ill, would be found capable of undertaking such ‘work’ and would have their benefits removed or denied.  They’d have to claim jobseekers’ allowance instead, even if too ill to leave their homes to go and sign on.  They’d be expected to attend work-related seminars and courses or even, perhaps, to do ‘volunteer’ work in some capacity for their jobseeking benefits.  And, when they couldn’t, they’d be denied those, too.

I don’t know why I have written that paragraph  using the conditional tense – this is what’s happening now.

If the existence of that narrow dividing line is given credence, the fact that employers generally don’t want to employ homeworkers, or often actively try to exploit them if they do, becomes irrelevant.  The fact that it is pointless to insist that disabled people can work when no-one is prepared to give them the chance to do so is ignored.  The Disability Discrimination Act (now the Equality Act 2010) does not compel employers to make their workplaces accessible – ‘reasonable adjustment’ tends to mean reasonable from the perspective of the employer, not the disabled employee.

I am fortunate in that I have experience of something which can be done effectively from home, requiring no adaptations to the workplace other than a willingness to include a remote worker via the internet.  And yet, opportunities to prove myself have been few and far between and, occasionally, still unfeasible.

I’m more than lucky.  I’m not fending for myself as so many disabled people are.  I have a supportive family and, although things are tough, I’m not about to starve.  But if the government, supported by the bigoted, succeeds in insisting that limited capability in isolation is the factor that decides whether or not a disabled person should work, then we are going to see more and more implausible decisions as regards that capability, with thousands and thousands of people told that they can work in certain circumstances despite it being clear that those circumstances are never going to arise.

And some of them may well starve as a result.

Life is all about balance and stability.  Whatever you cut you have to repair.  These senseless, ill-thought-out reforms to welfare are in no way ameliorated by rational, prudent support for disabled people who want to work, in some a manner that suits them and that they can achieve without distress or despair; nor by any acceptance that, for other disabled people, there simply aren’t any employment options.

I want to work.  I’m trying to.  Give every disabled person that opportunity and we might be onto something.  But we have to start with respect for the plight of the many people not fortunate enough to have any option; for whom work and self-sufficiency are distant memories or an impossible dream.

The last few days have been… incredible.

I’ve been reading many stories, via the ‘One Month Before Heartbreak’ blog, of disabled people and their carers.  Terrible, heartrending stories of suffering and loss of dignity; of hardship and struggle.

Am I so unpleasant a person that I find these stories enjoyable?  No.  Of course not.  But I can see – where, I suspect, politicians like David Cameron and Nick Clegg cannot – the metadata behind these blog posts and tweets and newspaper article comments.  I can see the courage and the strength and the wry humour.  I can see the defiance, the determination and the dignity-despite-it-all that underpins every one of the histories that I have read.

I write fairly frankly on this blog about the things that have happened to me and the issues my ill health is causing our family.  And, although I try to remain upbeat, I do have days where my dejection is uncomfortably obvious.  On my worst days, I don’t write about what I’m going through, because I don’t want to be self-pitying and because I already worry that I am too self-absorbed.

This caution comes from previous experiences on the web.  I have a long history of participating in social media and I know that, no matter how eloquently you write, no matter how genuine and honest you are, there will always be someone who will misunderstand you.  If you put yourself ‘out there’ you always run the risk of criticism, and that criticism can be painful.  And if you put only part of yourself into words (because the rest is just too raw) then the potential for misunderstanding becomes even greater, as those observing you are not privy to the full picture and will make judgements in the absence of all the information required to do so fairly.

A case in point is provided by certain comments (now deleted) appended to this article in the Guardian.  One commenter appeared to be advocating the euthanasia of damaged babies at birth.  You’d think that impossible, wouldn’t you?  Alas not.  In response to a thought-provoking article by the mother of a disabled child, not all of the comments have been supportive or understanding.

And when the Daily Mail published their article about me, the same thing happened.  I didn’t realise how deeply unpleasant the response was likely to be because I wasn’t aware of how my words had been subtly manipulated to trip all the switches of a certain mindset.  I should have known better.  I do now.  And, as a result, for a long time after that fiasco, I hardly blogged at all, writing just a few posts each month instead of almost every day as I had been.  I couldn’t face any more hostility.

But, although I am nervous, I am going to continue to write in this vein.  I shall continue to share, and I shall continue to read the stories that others have shared.  I’ve had some comments on my posts which have made me very glad that my words have touched others, many of whom are coping with far worse than I have to deal with.  I am proud to be a part of this.

The cuts proposed by the government are nothing short of horrific.  Big corporations get their tax bill waived*; ridiculous railway improvements get big budgets and – still! – disabled people are victimised, ignored and denied.

As I wrote in the article’s comments, I find that I want to stand with and for the people whose stories have touched my life in the last few days.  If that means I open myself up to discomfiting criticism, so be it.