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)
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.
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.