Monday, 28 October 2013

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


  1. I thought I left a comment, but..? Anyway this is such a good post, an essential read. I cannot agree more with what you have said and want the whole world to understand. I thought chronic illness would make us all more tolerant but we can live in hope that it may happen.

  2. I think in some cases it makes us less than tolerant. Not me of course, but even in the chronic illness community I have seen paople say "at least you can get out of bed" or "your lucky you dont need a cane", and as being a trainer I often get to my face that I mus be crazy because exercise just makes it worse. (which I always acknowledge may be true for some but not others). I have seen wonderful things come out of the groups and pages like support groups and communication through blogs, but there are still some who think because others dont have it as bad as "they" do, they musty not really be sick or they dont really know what it feels like and that makes a little sad for those people. They are losing an opportunity to become enriched, connected and accepted.

    1. I think that's spot on Dawn, and it is sad. I've seen it in some instances basically become a competition and that's entirely unhelpful and I believe the wrong approach x