That is a traduction of an article I wrote about my lovely disease some days ago, I wanted to share this with you, just because it's important to know we are not just these girls on photos... We all have an history.
That's it, I shout. That's it, I've woken up feeling angry, and I've got things to say.
I'm tired. Only just up and I’m already exhausted, worn out and ready to give up.
"What’s she complaining about?"
Not only am I tired, but also overwhelmed.
Overwhelmed by the general behaviour of other people. Overwhelmed by their nastiness and their meanness.
So, after years of silence, this time I dare. I dare speak out, I dare write, I dare openly express what a frigging mess this really is.
It’s easy to judge when we have no idea of what another person’s daily life is like. So now it’s time to take stock of everything I’ve heard since my daily life has gone from that of an unstable, young party animal, to that of a sick woman.
For three years now, life has become a battle.
That’s rather a strong word you say? You have no idea.
From the outside, I smile, I’m glowing, I live like any one of you, so it’s easy to think that "everything is ok" with me. But do you know how exhilarating it would be for me to one day hear "That’s it Mademoiselle, everything is ok»?
So, I’m stepping out of my silence and I’m shouting out: Yes! YES! I am ILL! I’m ill and I’ve beaten things that all those stupid bastards who threw me down wouldn’t even begin to comprehend. I won. I have won the right to be happy after so much fighting. Nobody has the right to take what I’ve won, through pain, away from me.
I want to condemn.
Starting with him, that little jerk with a moustache.
That low-life who, for months, dared to doubt and caused everyone in my little universe to be doubtful.
For yes, it’s already hard enough to be ill, but the meanness of others means that you have to fight a problem other than the disease: the way in which others see you.
I spent months pretending that I was fine, pretending to be energetic, to be able to go out, to party, to work like everyone else. At the cost of my health, leading to long hospital stays and chemotherapy that is slowly killing me. And all for what, in the end?
"You’re not really ill, you’re complaining about nothing."
"You should just live more healthily, instead of being a pain in the arse with your so-called pains."
"Oh that’s enough; you can manage on your own."
So what is Crohn’s disease? Let’s just make things clear before I continue giving hell to all those pests who have done their harmful work.
Crohn’s disease is an inflammation of the digestive tube. Right, yeah, ok, and…
Imagine this; tomorrow, when you get up, you’ll have a stomach-ache. Not a stomach-ache like when you’ve eaten too much, no, a stomach-ache that makes you want to rip out your intestines and throw them in your neighbour’s face. As well as that, tomorrow, when you get up, you’ll certainly feel really nauseous and your whole body will ache because of the inflammation. You won’t be able to get out of bed because Crohn has nailed you to it. Tomorrow, when you get up, as well as shitting and puking on yourself and being doubled up with abdominal pain, your joints will start playing up and you won’t be able to stand. Tomorrow morning, when you get up, you’ll be alone; all by yourself; to do what you can to get through your day.
But that’s just it; Crohn’s disease can’t be seen. So it’s easy to point at us and just say we’re « lazy ».
But listen to me, you, the lower than the low.
Yes, I stay at home.
Yes, I don’t work.
Yes, I don’t go out until the early hours to prove to the world that I have balls and that I know how to get pissed.
Yes, those near and dear to me stay with me.
Yes, my day to day life is slowed down, because I cannot keep the pace.
But know this: I am proud to still be able to talk about it today.
It’s true that those of us with Crohn’s disease ("Crohniens") are recognized by the state as being disabled.
And yet again, at what cost...
"You’re taking advantage of the state with your false illness."
"Go and work instead of pretending to be disabled."
"If I were you, I’d prefer to work."
Well that’s just the problem; you are not us.
Having Crohn’s Disease means having to pay attention, all the time, to everything.
We must pay attention to what we eat (eating well is the beginning of happiness, right?), to what we do, to the accumulation of fatigue, to not lose too much weight. We must pay attention to so many things that you do naturally every day.
Having Crohn’s Disease also means treatment. Aggressive treatment. Full days spent in hospital, with a drip, waiting for the injected poison to take effect (I’m still waiting). It also means tons and tons of appointments with different specialist doctors who never know what to tell you because this disease is still not very well known by the medical world.
Having Crohn’s Disease may also mean awful medical apparatus. All types of ostomy devices, nasogastric tubes in order to be nourished etc. I had an artificial intestinal outlet on my stomach for a year, when I was 17. It wasn’t fantastic. But it didn’t matter; it wasn’t visible either since I wore loosely fitted clothes.
I don’t really know where I’m going with this.
Suffice it to say that I’m tired. Tired that those of us with Crohn’s Disease are being called liars, pretenders or people with psychological problems because the symptoms can’t be explained.
Tired of having to justify myself when I can’t go out, when I can’t go to a party, when I can’t eat the same as you. Tired of seeing that all the hard and marvellous work done by my fiancé to help me isn’t even respected by those close to him.
I'm lucky to have found him and to have people around me who know. People who have seen everything I’m talking about here. People who have hung on as tightly as me when we were waiting for test results, or for me to come out of the operating room. People who cried with me when the diagnosis was given. These very people who will never blame me when I’m exhausted and need to rest, who force me to stay in, who adapt themselves to me rather than expecting me to adapt myself to them, which is impossible.
I would like all those insignificant jerks who want to harm me to understand that it isn’t because I’m sometimes the « sexy chick who poses » in front of the camera, like this:
Or like this...
that I’m not also this girl, when Crohn has got a hold on me:
It’s my choice, my victory, to show you only the first one.
That doesn’t make me a liar, or a fake sick person, or a manipulator, or an opportunist. That just makes me a strong woman who only wants to show the best of her, because I refuse to give in to the disease, in spite of the difficulties I encounter day in, day out.
And if you are unable to understand that the people who love me stand by me and fight with me, then walk on by, because I know they will never give up on me.
Yes, I smoke cannabis all day long in order to stand the pain, to keep smiling and to continue to eat. That doesn’t mean I’m a junkie.
Yes, I stay at home because the simple act of taking public transport becomes complicated and stressful with Crohn’s. That doesn’t mean I’m lazy.
Yes, I don’t work, because I suffer, and I receive state benefit for being disabled, even if it isn’t visible to the eyes of the world. That doesn’t mean I’m an opportunist.
That just means that I’m a woman who has an incurable auto-immune disorder.
And no, it’s not my fault.
Heartfelt thanks to Nicolas, Monique, Shana and Guillaume. You are my strength.
So that's the actual felt about my personnal experience from the past that ''helped'' shape me into the person I am. Crohn's disease makes me more strong and adult.
Thanks @MISSY , @RAMBO @LYXZEN for your work on homeworks. ♥
( I don't know if I answer correctly at this one but I did my best. )
