Saturday, 14 September 2013

Diseasey Rider

This week is 'Invisible Illness Awareness' week. 

It's a week in which I assume, we aim to highlight  the struggles that people with un-seen conditions have to endure in their day to day lives. 
Great, but the only slight snag with that I find, is the 'highlight' part. By it's very nature an invisible illness is just that; invisible. So how can we possibly show you what goes on inside? 
Put simply, we can't. 

It's often said that if people could see what goes on under the cover of a Crohn's patients skin they would think differently about how they treat said patient. Well I would hasten to add that that would potentially be the case if anyone, healthy or otherwise, were suddenly to start parading around skinless and as naked as the day (before) they were born. 

It's true to say that having an 'invisible illness' can be both a curse and a blessing. It's incredibly difficult to explain that you feel like death warmed up when people on the outside don't see any physical change whatsoever. It can become increasingly frustrating, and often feel like you are trying to 'prove' yourself to others, when really it's the last thing you have energy or time for. 

I wholly admit I often find the 'invisibility' of Crohn's a challenge; but on the whole it's funnily enough the one aspect of my condition I am mildly grateful for. 
I feel it allows the patient to claim a bit of their control back. YOU decide to tell someone, YOU decide who you want to know and YOU can power through it without having to tell a soul if you so desire. 
Crohn's can take away so much of your dignity, and affect such a huge chunk of your life that I find having that power over what I choose to conceal and what I choose to reveal, an immense relief. 
I don't have to tell every single person I meet what's wrong with me from the get go, I can disclose the ins and outs of my barmy bowels when and if, I see fit. 

However, although this sickly cloak of invisibility can be a found to be a bonus, it often leaves you in awkward positions in which you feel helpless to express yourself..
Today I was at the shops, I felt tired and weary when I left but by the time I'd gotten through my short shopping list and was awaiting the bus I felt AWFUL. Panicky and hot, sweating and shivering and in incredible pain. I was breathing through the cramping and willing myself not to pass out. I focused on the bus pulling up at my street and getting my keys in my door and breathe breathe breathe.. 
The bus arrived and I was motioned on by a neighbour, sat myself down and sighed with relief at the thought of being home in a matter of minutes,  only to hear this from a few seats back; 
"There was a pensioner at that bus stop and she just stepped on before him.." 
The 'pensioner' in question is 52 and happens to be the kindly neighbour who motioned ME to step onto the bus before HIM, after ME having initially stepped back to let HIM on. He had also just come direct from the gym where he works out twice a week, along with his coaching commitments for a football team of under 14's. And I NEARLY PASSED OUT GOING TO AND FROM THE SHOP. 
I left the comment hanging in the air because I almost sobbed at the sheer embarrassment of it all, but mainly with frustration. 

There will ALWAYS be people out the there who will judge you. She decided because I was younger than this man that I was both rude, and clearly healthier and more able bodied than him. Wrong on both counts. But nevertheless she felt it necessary to mumble insultingly regardless of having any facts at her disposal.

We are all guilty of judging others based on appearance. If you disagree with that comment then you are a liar. (See what I mean about judging others?) 
But what we need to change is the idea that just because you can't see someone is in pain doesn't mean it's not happening. Don't decide to slate someone or assume you know better when you can't see what we can feel. Had a man gotten onto the bus with a broken leg, he would've been accommodated and pitied because he was VISIBLY struggling. How do I defend myself against insults based on a condition you can't see? 
Think before you speak. 
Will what you are about to say enrich yours or anyone else's life? Or will it just end up the basis of a blog by a raging Crohnie? 
You be the judge. 

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