Divided we fall

One of the things I find most perplexing in life is when a community of any sort which is possibly ostracised from the norm (for whatever reason) then starts to divide itself down imaginary lines.

I follow a lot of chronic illness groups, pages and communities. I wouldn't say it’s a common problem but I have certainly seen it more than a handful of times. Usually the factor is age – the idea that you’re not old enough to have whatever condition you have because it’s accepted to be an older person’s disease. Arthritis is the big one for this but it’s perfectly possible to contract it young. Horribly, it’s also been known to appear in children.

(Really now?)

Sometimes it’s faith. I've come across numerous “miracle cures” which claim you must be a believer in order for the cure to work. That I can’t understand at all – if I’d found a cure for a previously incurable condition I’d want to share it with everyone I possibly could. Nobody deserves to be ill after all.

It’s not just present in chronic illness communities either. Glance at any forum, page or group dedicated to music, books or any other form of entertainment and you’ll find it pretty quickly. If you don’t have the particularly obscure bootleg by insert-band-of-choice of which only 27 copies exist on the entire planet then you’re not a “proper” fan. What do you mean you don’t have the first edition of the book signed by the author? What rock were you living under around publishing time? Oh, you only like it because you’ve seen the film. The accompanying sneers and superiority complexes are virtually tangible.

I’m not sure which of those two examples I find more idiotic.

You will know by now the biggest part of my love is given over to books. If I've found a book I really enjoyed I recommend it to friends who like similar things. I love finding people to talk about it with. Recently the culprit is the second book in Scott Lynch's The Gentleman Bastards sequence Red Seas Under Red Skies. As a result I'm all fired up and excited for a discussion of larceny and silliness with anybody who wishes to have it, tipping my fabulous (and imaginary) pirate hat as I go.

I can’t understand why anyone would disdain to talk to someone just because they’re reading something for the first time rather than having read it numerous times and been in the know for a while. What difference does it really make? I pride myself on my knowledge of Tolkien’s mythos (what I’ve read of it, which isn’t everything) but I’m as willing to talk to those who know more than me (A big fan who accepts more knowledgeable fans exist – who’d have thought it?) as I am to those who are currently scratching their heads and thinking “So exactly what is a Hobbit anyway?”

Even more ridiculously, the division can come down to something as simple and inescapable as gender. The redoubtable Angelina of Albinwonderland has spoken about this problem within the comic book community and particularly in relation to conventions. Her video “Fake Geek Girls” is linked below and well worth a watch. She draws attention to the concept of the title and sets about merrily debunking it for the ridiculous sexist rhetoric it is.

("Fake Geek Girls" from Albinwonderland's channel. I recommend watching a lot of her videos, not just this one.)

The thing to remember is that no matter how madly in love with the object of your interest you are now, at one point it was brand new to you, and at some point before that you had no idea it existed. People who don’t know a lot about it aren’t “fake” and they’re not failing to be “proper” fans; they’re just new to it like you once were.

If you can recognise yourself in any of that, I suggest you get down off that rather unsteady high horse you’ve been perched on. One day you’ll overreach, it’ll throw a buck and you’ll come off involuntarily – best to escape with a little dignity still intact, no?

I understand this phenomenon of exclusion even less when it comes to illness.

One of the oft-complained about scenarios I see across communities is lack of understanding from healthy people be they family, friends or complete strangers. The reasons for this are many and diverse and I’m not going to spend this post repeating myself about them. I’m also not suggesting it isn’t something to be complained about – it is frustrating when your situation is dismissed or you can’t make someone close to you understand.

With that in mind, what good does it do to then invalidate others experiences with the same condition just because they fall outside of the sphere of your specific health? How many times are we all going to have to hear the truth of “it’s different for everyone” before it actually sinks in?

Just because somebody is younger than you have encountered before doesn’t mean they don’t have arthritis or fibromyalgia or any other “older” diseases (I’m 24 this weekend and began having symptoms at 22 – my Dad has rheumatoid arthritis diagnosed at 28).  If another individual doesn’t suffer with auras it doesn’t mean they can’t have chronic migraines just because you do.

Symptoms which manifest differently to yours do not automatically equal lack of the same condition. This touches on a truth even deeper still – just because you can’t see or understand it doesn’t mean it’s wrong.

Furthermore, to quote Albinwonderland’s video: “Even if you own every Avengers comic that has ever been made, you still don’t own the Avengers.”

If you have any or all of the symptoms associated with a condition, you do not own that condition. You do not get to decide who has it and who doesn’t based on your own narrow experience. You do not get to say who you “allow” respect and validation for their contribution based purely on your own.

Every voice is valid and necessary. EVERY. SINGLE. ONE. When dealing with illnesses which lack a cure, a clear pathology and any sort of rhyme or reason at all, medical science needs all the information it can get. It needs the experiences of patients across the entire spectrum of symptoms, manifestations and quirks. Somewhere in a time to come I believe that someone will experience something and by chance they will tell the right person about it, and it will provide the final clue which completes the jigsaw.

Do you want to be the person who ignorantly dissuaded them from speaking up because you didn’t believe they fit into the “right” category? 

It’s an inescapable and tragic fact that when we play these sorts of comparison games, we all lose.

I shall summarise with an idea sprung from a proposed telegram of a certain Captain E. Blackadder for you all to consider.

Dear all. Stop. Please please please. Stop.

(Pretty much the expression I've been wearing whilst writing this.)

Wishing you all many spoons xxx

30 Day Chronic Illness Challenge: Days 7 and 8

(I was back at home in Sheffield for the weekend, hence the double-up for the day I missed!)

Day 7: What was the biggest realisation you've had?

This was a two-fold realisation I think - firstly it was the discovery that nobody can truly understand the nature of a chronic pain condition unless they are experiencing it themselves and that it isn't my fault for poor explanation or not quite being able to articulate it in a way from which an epiphany could spring.

Secondly and I think more importantly it was that this is, in fact, not always a big problem. As long as I can make the people who need to understand do so - and I really have adopted a "take no crap" approach to that - I'm fairly accepting of the fact most people can't really understand.

Providing nobody outright tries to accuse me of lying, or tries to assert that they know better than I do about my own body then I really don't mind most of the time. I'm almost uncharacteristically assertive with those who are on the "need to know" list - my work, for example - but otherwise I revert to type as a very un-showy individual and actually don't really want that many people to know and understand in depth and detail what's happening in my weird and wonderful body and brain.

Unless of course either does something which has colossal comedy value - then I think that's fair game to share. I find laughing at my chronic quirks soothing and helpful, and the gift of laughter should be shared as much as possible in my view.

And if I ever particularly need attention brought my way (illness-wise or not), shouting "I've got a plan and it's as hot as my pants!" will usually do the trick!

(Blackadder references - both brilliant and necessary.

Image courtesy of www.disgracejones.com)

Day 8: Where do you see yourself in five years time?

I really do despise these sorts of questions. 

Most of the reason is that I really don't know. I achieved one of my main wishes this year in moving in with my partner in York, so I suppose I've rested on my laurels a bit since then. It's hard to make this entirely illness specific as well, as is often said incurable ill health does touch on and entwine with all aspects of your life. 

I'd like to be in a job where I'm happy enough and with enough leniency in key areas to allow my health to remain at optimum level (which has not been happening recently) - having this stress reduced is a very big priority as I am determined to hold down a full time job. It's a very large point on which I am not prepared to budge unless my health were to get significantly worse to the point where it would be unfeasible. To have an environment conducive to good mental and physical health and still be in a job which I find intellectually challenging sounds like a large ask, but I don't think it's impossible to achieve. 

One of my other long term ambitions is to take on a big walking challenge for a Fibromyalgia charity. Not everyone is physically capable of undertakings such as this in the name of the charities they hold most dear - that's the nature of chronic illness - but if planned and trained for carefully I believe I can do it. I've also always been one of those people who feels that those who can essentially should. I've looked into the Yorkshire Three Peaks and also into a 26 mile walk over the border from my native Sheffield in Derbyshire in countryside I am familiar with as I spent much of my childhood and adolescence exploring the wonderful Peak District. I am in no position to do so this year and probably not next year - training up for something of this nature would be a huge long term undertaking, and has to be preceded by what I've previously mentioned in terms of getting settled into healthy and challenging full time work. 

So, there you have it. In some ways I have never been a person who is content to dream small. 

And speaking of dreaming big, after 77 years we have a British Men's Singles Wimbledon champion. I'm not a huge tennis fan but I can always get behind a British champion of any sport. I will round up my thoughts for today with saying well played and well done to Andy Murray.

(Well deserved and a long time coming. Image from Tumblr, source unknown.)

Here lies Edmund Blackadder, and he's bloody annoyed

(Courtesy of SMBC-Comics.com)

I’m sure anyone who frequents the realms of the internet will have encountered the above illustrated “Mount Stupid”. The silly little hill where those who know very little about the topic at hand sit and attempt to drown out everyone else with their non-knowledge.

I will admit, this is where all thoughts of serenity and calm go out of the window for me. I don’t like people who play the know-it-all in any walk of life, because I see a distinct difference between being knowledgeable and using it in a helpful manner (generally when asked), and being knowledgeable (or not) and using it to try to look better than other people.

My body is not a plaything for your game of superiority.

If the collective brains of medical science don’t know all that much (comparitively speaking) about Fibromyalgia, how ludicrous is it for someone to skim read a Wikipedia article, do a quick Google search or indeed just parrot whatever they’ve heard second hand to think they will know better?

In short, how dare you assume you know more than me about my own illness?

There are of course differing degrees of this ignorance. I’m sure I’m not the only one to be accused of making it all up, of lying. I can’t even begin to comprehend this – why on earth would anyone *want* to be unwell? The usual answer offered is to gain the sympathy and attention of others, but speaking as a sufferer of chronic illness sympathy is the last thing I want. Understanding yes, pity and sympathy no. Sympathy just highlights the problem – I know it’s there, I’d rather not draw any further attention to the fact my life is different from before.  

When I fell ill I was at first misdiagnosed with Irritable Bowel Syndrome. Knowing little about it and not being entirely trustful of the results of your average Google search, I asked for advice from others on a public forum where I had seen the condition mentioned previously. A user asked what it was (I’d typed “IBS” rather than the full name) and immediately several people waded in with their opinions – and yes, most of them were indeed residents of Mount Stupid. Whilst saying “it’s just a bit of diarrhea or constipation” isn’t strictly a lie, it barely skims the surface of what is actually a much more complex problem than “just” that. Others jumped straight in with “it’s not serious” – and while it doesn’t do any actual damage to the body in the way that for example an inflammatory bowel disease would, it can have a profound effect on quality of life.

Lesson learned – don’t ask for wider opinions in so open a fashion, you’ll invite more ignorance than you will helpful advice.  

An example probably more widely seen by most is the subject of depression. Everyone has an opinion on the “myth” of what antidepressants do or don’t do. Every Tom, Dick and Harry (who are usually notable only for the fact they are not and have never been sufferers of depression) suddenly know exactly what actual sufferers should and shouldn’t do. In short, all the residents of Mount Stupid are suddenly mental health specialists.

Fibromyalgia has its own specific set of misconceptions, as do all poorly understood conditions. Some of my favourites are below.

“Doctors say it’s not even a real condition, just a bunch of symptoms.”

Gee, thank you. Whilst this is indeed one theory (research continues), for the moment there is a recognised condition with the name Fibromyalgia with a legitimate set of diagnostic criteria which have to be met. How do I know? Why, because I was put through the tests for the criteria by a doctor who then used the results to diagnose me. And no, I don’t want to have the pressure point test ever again. It hurt.   

“You can’t be in pain *all* the time, that’s ridiculous”

Can’t I? Please resend the memo confirming this prohibition, my body clearly missed it. I do understand that permanent fluctuating levels of pain are a difficult concept to comprehend for someone who has only experienced the transient finite pain we’re all accustomed to, but I can assure anyone reading this that it is indeed a very real phenomenon.

“You don’t look sick.” 

My all time favourite. There are many memes around on the internet offering various answers to this question, ranging from the brilliantly sassy to the downright rude, but my personal preference (purely for humour value) is below

Now, I’m not suggesting it’s a lie. On a simplistic level it’s perfectly true – we generally don’t look sick. However, do these people ever stop and think about why many of these things are called “invisible” illnesses? Shockingly, it’s not just a clever name.

In summary, I might have days where I hate what my body is doing right down to the depths of my soul, but it’s still my illness and my body. It’s not yours. It’s not happening to you, and without actual experience of the same thing it is very difficult to truly understand the problem.

What most chronically ill folks who have their heads screwed on the right way would want is that you at least make the attempt to understand – and you accept what we have to say.

If all you do is spout the little you think you know, then you prove your own ignorance and more disturbingly you prove your foremost desire is to turn the situation or conversation into being centred on you. You prove your own lack of compassion.

Our doctors often don’t know the things we need them to – so you, a random bypasser in our story, certainly don’t.

And to finish, a humorous tip. Whether it’s a chronic illness, a topic of news, or a banal discussion of the weather, the following is never going to be a clever answer: