Tuesday, 10 September 2013

I Choose... The Retired Bridgeburner

Invisible illness isn’t a choice, but I choose… to share my experiences through The Retired Bridgeburner.

(The origin of the name of this blog, and a series for which I will know passion unending for the rest of my days as my touchstone. Image form ebookee.com)

I had to wrestle with myself for a fair while before committing to creating The Retired Bridgeburner back in February of this year, and I don’t think I’ve ever spoken very clearly on the blog about why I chose to do so. Given it’s in-keeping with the theme of this year’s Invisible Illness Awareness Week it would seem fitting to do so now.

Firstly, I’m going to try and explain why invisible chronic illness is an inherently lonely state of being, something it’s worth understanding in the context of the origins of my writing. As a patient suddenly struck down with these monstrosities you find yourself surrounded by people who for good or ill cannot really understand what’s happening to you. It’s not their fault for the most part; for the first year or so I didn’t understand, so how anybody else could do is beyond me. For a while I wondered if it was a quirk of my personality combining with the situation to create this loneliness, but on venturing into the chronic illness tags on Tumblr, finding forums and Facebook groups I soon realised this was a problem almost universally felt across the self-named “spoony” community.

Another thing I soon discovered is that outside of these small boltholes and safe havens most patients were quite reluctant and even scared to talk about their experiences – having at some point been on the end of comments along the lines of “You’re just attention seeking”, “You’re just lazy”, “If you’d just exercise and lose weight”, “You’re faking it/lying/your condition doesn’t exist” etc. and naturally had ceased to talk about it. Rather than put up with unhelpful or abusive reactions from others they suffered in silence.

What I soon realised was that suffering in silence was not acceptable. I understood why patients did, but at the same time I became increasingly angry at the general ignorance which drove them to do so. I began searching around for people who broke this mould and wrote open blogs – my search didn’t come up with nothing, but certainly with understandably slim pickings.

One such blog belongs to my friend Jenny, a sufferer of severe chronic eczema currently going through Topical Steroid Withdrawal in a desperate attempt to aid recovery. You can find out more information about her experiences and about “Red Skin Syndrome” on her most excellent page here.

A little reluctantly at first I came to the inevitable conclusion that if you want to make a change for the better, you have to be prepared to do it yourself.

The name walked into my head pretty much without thought. A play on firstly being ill, but most importantly a reference to the authority resenting, hard-as-nails band of soldiers who represent one of the last vestiges of the “old days” in Steven Erikson’s Malazan Book of the Fallen series. Why? Partially because they’re some of my favourite characters* but mostly because the series became a touchstone for me in the dark days of numerous hospital visits and seemingly innumerable dead ends.   

Armed with a name I started to think about what I wanted to do. It wasn’t enough (for me at least) to write long posts declaiming all the reasons Fibromyalgia and Interstitial Cystitis are not the most friendly of beings. That wouldn’t give patients anything they didn’t already know and would be likely to kill off any interest from healthy people who wanted to find out more. If I was going to commit to this and put the most vulnerable part of me out there on show, I wanted more than anything to be of some help.

Thus the most simple of ideas – to aim for positivity.

I had to tread a fine line with this – going for 100% positive all the time and refusing to acknowledge the rather long list of negatives would be firstly unrealistic and unhelpful and secondly likely to make me throw up. I’m a cheerful soul but I don’t do saccharine and sugar-coated. I wasn’t aiming to be fluffy, whiter than white and universally liked after all; I was setting out try to do something useful.  

(Dovakhitty - my only allowance for "fluffy")

One of the things which becomes apparent in the chronic illness experience is that you never stop learning, and so I decided I’d share the things I learned and any helpful practical tips these led to. I soon found I couldn’t do so impersonally, and regular readers will know the blog is littered with unashamed geeky references, whimsy and my dry and sarcastic sense of humour. I’ve never been a believer in the concept of presenting an “internet persona” which differs from your true person, it’s dishonest and I neither like it nor have the patience to entertain it. I couldn’t be honest about my experiences unless I went about it being nothing less than myself, warts and all.

Now here we are today. The blog has certainly attracted its fair share of nay-sayers which was always to be expected, but from the intended audience I couldn’t have asked for a warmer or more appreciative welcome. She’s just broken 12000 views and to my delight some of the most popular posts are those in which I’ve mentally said “sod it” and waved my “geek girl” and heavy metal fan flags respectively.

So, why do I choose to be open about my most vulnerable side and write The Retired Bridgeburner?

Because it’s important, and every voice attempting to raise awareness and speak against ignorance is another step on the road to wider acceptance that invisible illnesses are real and just as deserving of respect, understanding and compassion as their more visible counterparts.

"Even the smallest person can change the course of the future."
The Lord of the Rings, JRR Tolkien

*If you’ve read the whole series and Fiddler in particular didn’t rend you into tiny little pieces at the end of The Crippled God, I’m sorry to inform you that you probably don’t have a soul.


  1. Your blogs are wonderful and I couldn't begin to write as eloquently as you, as much as I love to write. For me, the old fibro reached into the grey matter and seemed to pluck my way with words right outta there.

    Long may your blog continue. I always read it when I get time to concentrate and always love what you write. It's like reading something and nodding all the way through. I'm sure many other chronic illness sufferers will relate to so much you say.

    The personality that comes with the blog is a must and one of my favourite bits.. otherwise, it would just be reading yet another informative piece of information and advice about our illness. The personality and opinions are needed and help put across what living with this illness is like.

    It also helps to remind us of the positives, which its sometimes easy to forget on a bad day.

    In short. Yay you!

  2. What she said! I love how you're able to put a positive spin on just about everything, even with how you're feeling yourself. If anything, that is something of which you should be hugely proud of and I think that itself shows just how strong you are. You're truly admirable Miss Harding :)

    Also thanks for giving my blog a shout out! You can see from the very beginnings that my blog was supposed to be a series of posts, much like yours, to show people they're not alone. Yet as time went on (and I decided to go through topical steroid withdrawal) my blog has taken another turn and is now more journal-like, in that I feel it necessary to talk about what I am going through on a weekly basis. Then again, with the amount of recurring infections and such I've encountered over the past few months it wouldn't make sense if I ignored them all.

    "being nothing less than myself, warts and all." <<< a common phrase or not, there are certainly no warts present on you missus :p


  3. I don't blog but I am utterly open on FB about my FM, as indeed I am face to face with people, but since I'm still working and thin and fit and otherwise healthy, it's not too hard to be so. Hardly anyone who meets me can grasp the idea that I'm in pain 24/7, I just seized up in the office and some colleagues were surprised at me walking round the office stretching and yelping, even though they know I'm ill - they forget, I guess. But unlike most people with FM I have NO other conditions to worry about so I'm not really a poster girl for how bad this condition is. I've not had one single person try and tell me I'm lazy or imagining it, other on or offline, oddly enough. I'm so lucky, compared to what seems to be about 95% of the FM commmunity!

  4. So glad you decided to blog about your fibro as I enjoy reading your thoughts. Thanks,