Carpe Diem

(Dead Poet's Society)

We in the UK woke up this morning to the sad news of the passing of Robin Williams. For the moment pending a full investigation the coroner has given an initial verdict of suicide via asphyxia and Williams’ publicist has confirmed the actor’s long running battle with severe depression.

I will be very clear. I do not suffer with depression – I never have. Some of those close to me do so, but I appreciate this gives me no idea at all how the condition manifests and how it feels to be a sufferer. I don’t want to use this post (or any other) to appropriate anyone else’s problem or indeed talk about something I lack the right and requisite knowledge to tackle correctly.

However, the passing of Robin Williams has served to illustrate the on-going stigma society places on mental illness, particularly in comparison with physical ill health – and that I feel I can talk about successfully. I’ve written about how poorly this is often treated before in A Silence of Three Parts, but I wanted to illustrate something specific here.

Depression by its very nature is a long running, complex and often incurable disease. It shares the same space as many other “invisible” illnesses in that treatment is limited to managing the condition and its symptoms. Often there is no rhyme or reason, and if a person often held to be one of the funniest men on the planet can succumb then it truly illustrates that the disease is indiscriminate and can strike anyone anywhere at any time.

Many will think I’m delving into semantics here and little else, but I ask that you stay with me on this. Semantics are important in the context of how we label and therefore understand the world around us. Our use of words often shows a great deal of the thought process behind such words.

Reading the various reports of Williams’ death this morning, one thing is abundantly clear.

We as a society regard suicide as a choice freely and willingly made. In doing so we completely divorce it from the background leading up to it, and therein I think lies the biggest problem in terms of stigma and misunderstanding.

I’ll explain the context in which I’m criticising that view, before you reach for a pitchfork. Let’s say for example someone had died of a heart attack after a history of heart problems. The heart attack would be regarded as an upsetting but valid complication of the historical underlying condition and in all likelihood nothing would be questioned any further.

Why therefore do we not allow for suicide being a complication of on-going depression?

(The Black dog - sane.org.uk)

The logic is just as sound in both cases, but as a society we seem to have a huge problem accepting mental ill health to be as genuine and blameless as cancer, heart disease, arthritis or any other physical ailment. In my experience people seek to apportion fault with the sufferer – how many times have you seen “Just think positive!” or “If you just cheered up a bit...” thrown in the face of the genuinely ill?

Saying things like that is seeking to place blame. In saying that a person could help themselves by changing their behaviour you invalidate the idea that the condition exists regardless. Most of us have some small capacity to improve our surroundings in a way that can be helpful to overall health, but that does not make us responsible for the hand we are dealt. Nobody asks to be depressed, in just the same way nobody asks to contract cancer. I most certainly didn’t ask for Petunia to show up either whilst we’re on the subject.

I am venturing into the realms of opinion now, because I can’t call up the ghost of every tragic suicide victim the world over and ask them to corroborate my thoughts for me. Be that as it may, I don’t believe that any individual completely devoid of illness chooses to commit suicide.

Notice how I didn’t add “physical or mental” to that statement? I shouldn’t need to – and this is where my point about semantics comes in. There should be no need to qualify whether an illness is physical or mental – it is simply an illness and that should be enough.

In summary I’d like to ask (if you have the time) that people have a look at my post here. It links up to Dead Poet’s Society and why that film meant so much to me – it’s the only fitting tribute I can offer for Robin Williams’ talent and work. Williams’ character Professor John Keating says in the film that “Words and language can change the world”.

A little kindness and compassion for one another can do that too.

RIP Oh Captain, my captain.

Wishing you all many spoons xxx

“…To be good great and joyous, beautiful and free.”

Regular readers will know from previous posts like New Horizons, Rainmaker and "All you have to decide..." that I have some very strong feelings on the topic of self confidence whether related to chronic illness or not. It’s a delicate and sometimes elusive sense of self that I believe everyone has the right to be able to find. Poor or shaky self confidence can have a negative impact on so many aspects of a person’s life, and I really think it’s something that should be treated with more importance and compassion than it generally is.

In approaching the question of whether suffering with a chronic health condition affects self confidence, I think it would be incredibly foolish to suggest otherwise. No matter what it does to you physically or mentally, it’s not likely to go away or if it does it won’t do so for a long time. Some people’s conditions can be managed well; others can barely be contained at all. Often the health professionals we go to for advice cannot help and long ago ran out of options for suggestion.

I think one of the particular ways this can manifest is when you have a partner, and even more so a healthy one. It’s surprisingly easy to fall into the trap of comparing everything they do to what little you might be able to manage and wondering at the fact you come up so short. It’s entirely human for both them and you to feel some frustration with this – but should any inkling of that surface then those feelings of anxiety and insecurity are only amplified.

One of the key things I think is incredibly important for this (and in a wider sense also) is to not put your self esteem into the hands of another person, whoever they are. In the same way you shouldn’t let the opinion of strangers have power over your confidence, although it’s harder it is the same logic to be applied to a partner or a close friend ill or otherwise.

More notably in the case of mental illnesses like depression and anxiety, it is important to remember the difference between the illness talking and the person behind it. There have to be boundaries in terms of unacceptable behaviour, but there should also be carefully guarded walls around yourself and your own confidence.

(Now this my friends is a wall.... The Wall From the South, Game of Thrones Wiki.)

I wouldn’t insult anyone by suggesting this is an easy lesson to learn. It isn’t, and I’m still in the process of learning it myself from both sides of the situation.

Furthering that note, for the ill person it’s equally as important to only be living within your own expectations and not those imposed or implied by others. Nobody knows your own body, your own condition and its entirely individual limitations the way you do – you live in and with it. Therefore you are the only person who should be setting expectations, and your thoughts on the matter are the only ones you should be paying attention to. When the expectations of others are unrealistic, you are not bound beyond all reason to attempt to achieve or exceed them. As important as it is to push and to try when dealing with long term ill health, it’s equally important to know when to say “no” to something and have the confidence to refute it and walk away before you risk yourself and your health.

When I say other expectations, mostly what I mean is the condescending kind lacking in any compassion. If you’ll excuse the vulgarity for a moment, it’s what I like to call “fix it bullshit”.

You’re too ill to hold down a job out of the house – make a job for yourself! You’re unemployed? Move to where there are jobs! You’re ill? Think yourself better! You’re unhappy with your life? Change it! I did X Y and Z which means everyone else regardless of circumstances can do the same!

I think that’s enough illustration of the attitude I’m talking about – which in other words means I’m going to stop typing it before I become too enraged with the stupidity of it all. In other words, it’s a complete refusal to live in the real world and understand that said world will not always dance to their tune no matter how self important they are.

That kind of attitude and expectation is potentially damaging to give heed to. We are all different and all faced with different challenges and situations in our lives. Not all of them are of our doing, and not all of them are within our immediate power to alter. Some things just have to be borne and cannot be fixed by just willing it to be so. There’s nothing wrong with tenacity and the will and drive to change your situation for the better, but it cannot be applied across the board to every circumstance. One size never fits all.

In the case of the chronically ill, our bodies and immune systems don’t want to stay in rhythm with the tune that we would prefer, and so we have to learn a new dance. That is a very different discipline altogether to the “fix it” approach – tapping your heels together three times and being whisked off to the Emerald City to ask the Wizard to fix it would be about as effective as “think yourself better”.

(I am unashamed to say that at six months away from a quarter of a century old, I still want a horse of a different colour.

Image from ollygreeneyes.blogspot.com)

There comes a point when you need to be able to recognise that working within your own limits and occasionally stretching them is still something to be incredibly proud of. The fact you can’t necessarily achieve what a healthy person could in your shoes should in no way be a cause to lessen that pride in yourself. You alone know your spoon count for the day, so you alone know what you can potentially achieve. You alone know when it’s time for a well-deserved day off also. You’re allowed those. Who is to tell you otherwise?

Your self esteem is yours and yours alone, and it is within your power to be kinder to yourself and to not entrust that esteem to the hands of others, no matter how close they are to you. You can reject what the wrong people tell you, and you can reject words said in anger and pain if you wish to. You do not have to listen.

In all the world there is only one you, and there will never be another. Each of us has a unique viewpoint and voice, and perhaps something only we can do. Each person has their own kind of magic. Each of us has it within ourselves to be as the title of this post – good, great and joyous, beautiful and free.

If your path to that doesn’t suit the expectation of those around you, maybe that isn’t worth worrying about after all.

Wishing you all many spoons, and just a little magic xxx

*The title for those who are wondering is an excerpt from the end of Shelley’s Prometheus Unbound. “This, like thy glory Titan, is to be good great and joyous, beautiful and free. This is alone Life, Joy, Empire and Victory”.

It’s a quote I’ve been quite fond of for some time, and for extra trivia it’s also a part of symphonic metal band Nightwish’s pre-stage ritual.

Don’t say I never tell you anything completely useless.

The thin skull rule

One of the things in life which is most likely to push my buttons instantaneously is the subject of bullying. It upsets me to see it, and excuses made for it upset me even more. I don't think it's anything to do with the usual bullied-at-school background either; I'm the sort of person who (for better or worse) has very hard lines set about right and wrong - and bullying is always wrong.

A situation a couple of years back came up in conversation twice recently and prompted me to flesh it out into a post. It also touches on themes addressed in Divided we Fall, of those who consider they have the right to judge who does or doesn't have any particular condition.

The situation revolved around a group of people picking on one individual. There had been some run up to the incident but it escalated beyond all sane proportions and became downright nasty. It never ceases to amaze me how "brave" people can suddenly be safely behind a modem and keyboard with ten others backing their view up.

The point most relevant to the post however is that when the individual was revealed to have a particular mental and behavioural disorder, it was unanimously decided on the spot that this was a "convenient excuse" and therefore couldn't be true and the bullying not only continued but intensified.

The phenomenon of cyber bullying achieved national attention in the UK when it formed part of the campaign for 2013's Red Nose Day. The subject highlighted in particular was those who tragically take their own lives as a result of relentless bullying. Simon's story was bravely reiterated by his family as a part of the awareness campaign, but the picture board of young people who came to the same last resort at the end of the video is probably the most horrifying part of all.

What links the two was the oft-seen aftermath when people discover less then palatable details later on and use the excuse "Oh, but I didn't know!" to attempt to justify their words or actions.

Some may think this harsh but I'm going to take this opportunity to cut right through the rubbish of that phrase. What they mean by "I didn't know" is "I didn't think about what I was saying because I didn't care what the other person might have felt in response".

How exceedingly unimpressive.

(A moment's light relief - let's play "Can you see it yet?" - image from truth4seekers.wordpress.com)

Mental illness and behavioural disorders share the common problem of all invisible illnesses - they cannot be seen. You cannot know by looking at an individual whether their diagnosis is correct, incorrect or a complete fabrication. It is also impossible to tell purely from what a person says or (perhaps more pertinently in this context) what they write.

I'm not discounting the scenario that behavioural disorders of all shapes and sizes are used as an excuse for what is just plain bad behaviour, however I don't believe that knowledge of that potential inaccuracy should equate to automatic assumptions across the board.

Unless you are that individual's treating doctor or specialist you are not imbued with any right whatsoever to judge their physical or mental health. Even if you have the same condition, you are not the automatic authority. There is no such thing as illness royalty and no health government - there is no individual or body of individuals who own the authority to judge others by their own convenience or expectations. I know we've all been guilty of this at some point, but that fact doesn't render the truth any less real.

You're still wondering about that title, aren't you?

(The beautiful Royal Courts of Justice, London UK)

In the criminal law of England and Wales, the thin or eggshell skull rule exists. The rule holds that a person who engages in any activity which causes another individual harm is liable for all the harm caused, even if the victim has any pre-existing conditions or vulnerabilities which mean an unusual level of harm is inflicted, including fatality.

A short and hypothetical scenario applying the rule: you hit somebody on the head and they had a peculiarly thin skull and died as a direct consequence of the blow you inflicted. Ignorance of the abnormality would not absolve you of liability for their death. It isn't murder because it lacks "malice aforethought" (premeditation), but criminal liability for the death is nonetheless recognised and would be upheld.

The general maxim? A quote directly from the Lord Justice Lawton in the conclusion of R v Blaue (1975) sums it up perfectly - "You must take the victim as you find them."

You very rarely know enough about another person to be absolutely certain of the whole truth of their circumstances. Until you do, exercise a little decency and don't be the person who stands in the cold afterwards saying "I didn't know".

Wishing you all many spoons xx

The most unkindest cut of all

Anyone involved in any of the chronic illness communities on the internet will I’m sure have seen the controversy surrounding the 60 Minute segment of CBS news which aired on 6^th October 2013 in America. The topic was disability. 

Commenting on the severely overstretched disability benefit system in the country, Senator Tom Coburn (a qualified physician) commented that twenty five percent of the files he reviewed at random should never have been granted disability payments, and another twenty percent were “highly questionable”.

Comments were passed on the rising prevalence of disability lawyers, with eighty percent of claimers now having legal representation compared to the twenty percent represented in 1971.

Lawyers Jessica White and Jenna Flizsar were then interviewed about the new onrush of cases flooding the Courts, and the sticking point for many ill viewers came when one of them flippantly declared that many of the cases were for conditions with “subjective symptoms like backache, depression and fibromyalgia.”

Let’s look at that for a second:

Subjective: based on or influenced by personal feelings, tastes and opinions.

So, what they actually came perilously close to saying is that the symptoms are all in sufferers heads based on their “personal feelings”.

(Food for thought. Image from izquotes.com)

Well gosh; we spoonies have certainly never heard that one before. Oh, wait….

Jenna Flizsar (notably not a physician or doctor of any kind) then went on to comment that there is “really no diagnostic testing for it [fibromyalgia]”. The correspondent Steve Kroft stated that it was therefore “hard to deny you’ve got it” and she replied “Correct”.

I’ll start very slowly shall I, for the benefit of their ignorance?

If you bothered to do any research at all - and the fact that you’re a practicing lawyer in the field and you clearly haven’t done should not fill your clients with any confidence in your professional competency – you would find that there is a very real diagnostic for Fibromyalgia. There is no one specific test, granted, but since when has lack of that meant that nothing is wrong?

Diagnostic criteria were set down by the American College of Rheumatology in 1990, introducing the inclusion of pain in all four quadrants of the body (both sides, above and below the waist) lasting for longer than three months combined with the presence of at least eleven of eighteen “tender points” – specific points on the body which cause pain when gentle pressure is applied. Diagnosis of fibromyalgia is often differential – if specific tests have ruled out conditions it can be considered to mimic (most notably arthritis and lupus) then these criteria are to be applied.

So not only are you incorrect, you’re a staggering twenty three years behind the times.

It’s not only recognised in America either. The International Classification of Diseases (ICD-10) compiled by the World Health Organisation firmly classifies Fibromyalgia as a diagnosable disease under the category “Disease of the musculoskeletal system and connective tissue” and the European League Against Rheumatism recognises it as a neurobiological disorder. I could go on, but I won’t.

What angers me most is that Fibromyalgia is estimated to affect 1 in 20 people worldwide. That’s a heck of a lot of people (roughly 0.35 billion, in fact) to be casually dismissed in a high profile manner as either conjuring their problems in their head or indeed using these “conjurations” to flout the system.

Comments about backache really make me despair as well. Not only did I suffer with it myself for years after a particularly nasty fall from a horse (the horse fell and I was pretty lucky not to end up underneath her), but I’ve watched my Dad battle with it on and off for most of my life. When I was a little girl he had a trapped nerve which took nearly two years of physical therapy to release, and then more recently suffered with locked muscles around an undetected joint injury. He walked bent over to one side for nearly eighteen months and sees an osteopath to this day. Both times he really should have stopped working but as a self employed bricklayer couldn’t afford to, and besides which he’s far too stubborn for his own good (I simply can’t imagine where I get it from). My Mum suffers with trapped nerves intermittently with accompanying sciatica too, but she never stops going to work either. My point isn't to criticise those who do cease work because of back injuries - what I wanted to illustrate was that in both cases they were advised that they *should* do so.

(Not fun, and yet another example of something which can't be seen being dismissed out of hand. Image from jhenteopengco.blogspot.com)

Not all people with backache are lazy or making it up and it’s highly insulting to assume so. 

Dismissal like this is why so many awareness blogs, websites and communities exist. I’m newly a member of the Fibro Bloggers Directory and there are 83 of us in just that one list. Over on FibroModem’s FCK Directory (of which I’m also a new and excited member!) there are even more. That’s just ONE condition.

Googling the term “chronic illness blogs” yields over two million results. Not all of those will be blogs, but a lot of them will be.

We can’t all be wrong.

Putting the righteous anger back in her box and wishing you all many spoons xxx

A silence of three parts

(Consider the title a hint that if you’re a fantasy fan you should probably give Patrick Rothfuss’ The Kingkiller Chronicles a go. Image from www.clandestinecritic.co.uk)

Regular readers will probably be aware by now that I’m not overly shy in giving my opinions on things, and that I do try to approach a subject reasonably and consider all the angles I can before writing it up. 

However, I’m sure we all have things which we struggle to meet with reason. One of mine is the abuse of the idea of free speech. 

To give some background, part of my job is transcribing detailed attendances and conversations, and working for a law firm means attention to detail and accuracy are paramount. However it also means I occasionally have to type something quite unpleasant.

Put simply I was typing up something fairly abusive and when challenged the individual turned round and said “I can say what I want, it’s called free speech!”

There seems to be an assumption that freedom of speech should somehow equal freedom from consequence. By your own logic if you have the freedom to say whatever you like, someone listening equally has the freedom to call you out on what you’ve said. To me it’s a part of being an adult that you recognise the fact that just because you can say it doesn't mean you should. 

In the sphere of illness, nowhere is this more prominent in my mind than the area of mental illness and in particular the subject of depression. 

Depression is not something I have personal experience of, but some people close to me have suffered or still suffer from it. I’m not going to sit here with a pretense of understanding the condition itself – what I wanted to do is comment on the fact the phenomenon above seems to be so much more prevalent in this area.

The little I have learned is that each person’s experience will be as individual as they are, and that there is no right answer that can neatly box everybody up. Similarly to most of the illnesses I talk about it can range from the mild to the soul-destroying, it’s not always easy to pinpoint a catalyst and it comes in many different forms and manifestations.

So why is it that everybody and their aunt and their dog has an opinion about depression?

Better yet, they all appear to feel that they have a right to express their opinion to sufferers without thinking about how possibly unhelpful it may be. Showing off their supposed knowledge and “informed” (make of the quotation marks what you will) opinions seems to be vastly more important than anything the sufferer might think or feel.

(The redoubtable Stephen Fry. Like him or loathe him, he's one of the foremost voices in combating the ignorance surrounding depression and those who suffer from it. Image from wallblog.co.uk) 

If the subject comes up I can guarantee you will see this happening. I've actually challenged people before and asked whether they have experience of depression – when they say no, most of the time its revealed that they've picked up their erroneous views from others who have no understanding and have taken the view as gospel without further thought (because actually evaluating it would be too much effort, right?), or they've done a quick search round the internet and cobbled together what they've found there.

Well Google isn't a doctor and if you genuinely think that a search engine will tell you enough to have an informed view of such a nuanced and variable condition then you are a colossal fool.

It may be outside my sphere of experience, but I still get irritated when I see people mouthing useless platitudes like “Just think positive!”, or “Just get some fresh air!” as if they’re talking to someone who is merely lazy (and apparently stupid).

I’m not suggesting that being outside in the fresh air and sunlight or taking exercise aren't sensible ideas, because that would be silly. However to tell that to someone with depression as though it is something they can just snap their fingers and decide is hugely ignorant and completely divorced from any compassion for their experiences.

And “think positive”? If it was as easy as that then depression and just about every other illness simply wouldn't exist, because everybody could just “think themselves better”. Subscribers to the method of auto-suggestion – training the brain into different thinking patterns by associating the old ones with something negative – are some of the worst I've seen for this approach.

It’s something new and shiny that works for their life (usually remarkable on the fact that depression is not involved) and they then seem to think that anything from a nail biting habit to suicidal thoughts can be fixed by something as simple as wearing a rubber band on your wrist and snapping it when you think anything negative.

Disappointingly I didn't make that example up. I've actually seen someone suggest that to a depressed individual. I've talked about this “what works for one must work for everybody” mentality before on TRB and it never ceases to amaze me that people are actually that blasé about their fellow human beings.

If it’s not telling people how to fix themselves then it’s dismissing the side effects of antidepressants (which they've never taken) as myth and invalidating the experiences of those who take them. 

Just a little piece of information: I take a drug called Amitriptyline for my IC and Fibromyalgia. In higher doses Amitriptyline is a tri-cyclic antidepressant. As with all medication, there’s an information leaflet in each box of tablets which explains the ingredients, anything which shouldn't be taken alongside it and also the list of possible side effects in order of how commonly they occur. 

The list is over two sides of the leaflet and it does include extreme mood issues and an array of cognitive difficulties – the things these knowledgeable folk dismiss as mere myth. Just to poke further holes in egos, it’s also worth noting that said list is part of the reason Amitriptyline and other tri-cyclic drugs are being phased out as front line depression treatments and being reserved for when other less problematic medications have proven unhelpful.

In common with other chronic illness sufferers, I've known several people who don’t like to mention they have or have had depression. They deliberately keep things vague to deflect the ignorant suggestions and worst of all the stigma that it’s “not really an illness”.

To bring this full circle back to my original point about free speech, I mentioned further up that it’s a part of being an adult to distinguish between things that you can say and things that you should.

Something even more important and even simpler yet: it’s about being decent as well as being right.