So here is the thing that pisses me off the most about Crohn’s – I look just fine. To the naked eye you wouldn’t have a clue that there is a war raging in my body.
I read an article on Crohn’s where the person described it as similar to seeing a duck on a pond. Perfectly calm on the surface, but underneath the water their legs are flapping away at a million miles an hour to keep them sailing along.
I like to think of it a bit like Spider Man. When Peter gets bitten by the spider he gets a heap of cool super-hero type powers like shooting webs from his hands. He looks like a normal person, but he is now super cool and can swing from buildings and catch bad guys easy-peasy, lemon-squeezy. Now, I can’t shoot webs out of my hands, but I can shoot some other things south of the board with the same power and lighting speed as spidey. Not as effective, but if any bad guy got hit with my spidey-sludge, they would sure as shit stop (and probably vomit and wish they had died)!
Normally when someone is sick, they look sick or sound sick or have something to indicate they are in fact, sick. I look fine. Even great at times. It’s totally fucked.
Pre-diagnosis, I confided in a friend that I thought I had Munchausen syndrome – you know, the mental illness where someone fakes being ill. It was the only explanation I had for the fact that I would be perfectly fine one minute and a crippled mess the next.
After my first flare on Boxing Day I was sent for an emergency ultrasound, where I was asked to tell them what was going on. I rambled like an incoherent nut bag:
“I was in so much pain I thought for sure I had been shot, then I had the sweats and I couldn’t eat, and I was cold, now I am hot and it hurts, but then it doesn’t, I’m going insane, aren’t I? It’s okay, I can handle it, just tell me AM I CRAZY?!?’…”
The poor technician looked at me with the same eyes you look at a puppy you want to take home but you know you just can’t, then she left the room.
I was like a stunned mullet, just lying there, gut hanging out, alone. What was she doing? Oh god, she’s calling security, she doesn’t want to be left alone with me, the technician is afraid for her life and has gone for back up. Door swings open and in she walks with another guy. He sit’s and grabs the probe-thingy and starts pushing around on my stomach. I can’t help my verbal diarrhoea and give him the same rant as technician 1. After what feels like forever, he calmly turns and says ‘you’re not crazy, there is indeed something very wrong going on in your abdomen’.
Harp music played, the angels sang and I thanked the lord that I was in fact, NOT CRAZY! Whoo hoo!
The thing I struggle with the most is that unless you have seen me in a flare, or anyone suffering Crohn’s being consumed by the death grip (what I like to call the gut clenching pain that your body inflicts) then you could not possibly understand how fucked up this whole disease is.
I have come into contact with people who don’t think I am sick. The genuine shock when someone sees you and they say “you look good”, said with a hint of accusation, like – how dare I look so put together. What I want to respond with is – hand me a piece of cucumber and I will show you my new party trick – but I just smile and say ‘I’m okay’.
It’s a lie.
Physically: I am mostly okay.
Mentally: Level 100, total bat shit crazy, but still mostly okay.
It hard to explain to someone what you’re going through, and all joking aside, sometimes it’s so gross you really don’t want to go into it. It’s also difficult when people treat you differently – the sympathy and pity is actually harder to handle than the pain. I want you to know I have this thing going on, but I don’t want to be treated like a sick person, or any different than before. Ironic, I know.
So right now, I am a duck on a pond.
Calm up here, mental down there.
The bruises on my arms from my latest stay in hospital are fading.
The gremlin in my gut is there and like the cute internal terrorist he is, peeks his head out every couple of hours, grumbling away to let me know he’s still here – like I’d forget.
Alas, I keep flapping my legs around under the water. Each day I still slap on the war paint and handle whatever the MOFO has for me and I will continue to pull my shit together day after day, because I may technically be sick, but overall – I am just fine.