'But you don't look sick'... (An article I wrote for The Mighty)
Updated: Aug 15, 2019
So I sit here, in my office, staring at my computer screen, knowing I should be doing work. Or maybe playing a game. Or maybe just replying to the 5 texts I have flashing away on my phone! My Mum posted a meme on Facebook earlier telling me I should be calling her more often. Ok, so not directly telling me…but surely that is the hint? So maybe I should be doing that.
Maybe I should be doing…something! One of the many things on my To Do list.
So why don’t I? Why is that washing still sitting in the machine? Why are the plates not washed up? Why do I feel so useless? (Just another lazy millennial, right??)
Oh wait…my entire body is on a constant mission to destroy itself, that’s why! I sometimes feel like my body thinks its Donald Trump hovering excitedly over a giant, red, flashing missile launch button - just waiting for the perfect time to ruin my day! A constant maniacal laugh echoing around my bones as I push myself through my daily life. But don’t worry – I don’t look sick!
Ever been told that? Well I have. Constantly. What is it exactly? A judgement? A question of my Blue Badge worthiness? Or a very odd compliment? I like to think it is the latter, but that doesn’t make it any easier to swallow. And it certainly doesn’t help when, in the eyes of the DWP, you have to be literally dragging the ravaged remains of your body through the assessment centre to even be considered for PIP benefit! But my main issue with this idea of ‘looking sick’ is…what the hell does it even mean? In my eyes, I do look sick. I see the surgery scars, the swollen joints, the significant limp, the walking stick! I see my disabilities because they are a part of me – I wear them like badges of honour – I’ve flipping earned these scars! They are the marks which prove just how strong I am – 27 years worth of internal destruction is bound to make me look a little sick! But, excuse me if I missed the memo, what is the general ‘look’ of sickness? Sure, I have my badges. But they won’t be the same as anyone else’s. Yours will be your own. And maybe only you can see them. Maybe you ‘don’t look sick’ either.
So, before I go off on another rant about feeling I should be upping my ‘sick look level’, let me say something now to those people who frivolously comment on my lack of sickliness:
Just because my pain isn’t smeared across my face, don’t think I don’t feel it. Just because I laugh and joke, and drive and work, don’t think I’m not falling apart at the seams. I feel sick. All day. Every day. If my internal scars were reflected on my skin, you wouldn’t dare glare at me as I park in the last disabled bay. You wouldn’t think twice about holding the door open for me, instead of letting it fall behind you, forcing my painful hands to use unnecessary energy. You wouldn’t even consider commenting on my appearance. You would know I was sick. And, maybe that’s what you want – ‘Oh yes, she looks nice and sick, jolly good!’ – ok, so maybe I’m exaggerating now, I apologise, but it really does make me wonder what on earth people hope to see when they look at me! You don’t want to see the exhaustion that pulls me down, the crumbling joints and disintegrating muscles, the fog which constantly rips my sentences away before they even leave my mouth. You don’t want to see it. And you shouldn’t need to see it. Instead, try believing me!
So if I offer you information about my conditions, or how I am feeling on a given day, thank me for sharing and move on – I don’t need the added comment - and if you really want to compliment me, I am sure you can think of something more original that ‘you don’t look sick’!
And finally, to all of you out there who skillfully mask your illnesses behind smiles, makeup and coffee: the next time someone tell you ‘you don’t look sick’, nod, savour the compliment, but don’t be scared to show them your scars. Don’t let them devalue your badges of honour! Be damn proud of them – they make you a warrior!