But you don’t look sick…

01/31/2015

This post is also available in: Norwegian Bokmål

She can impossibly be THAT sick she that looks so healthy. Not only does she look shamelessly healthy, she is also wearing fashionable clothing, and she’s smiling. She can’t be seriously ill!

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Have you experienced comments or hints like these? I have for almost 18 years! And it hurts just as much every time to be distrusted this way. Why is the world the way where you have to look really sick to get any understanding and acceptance for who we are? I get so angry when I meet prejudices like these. I can’t write for anyone but myself, so that is why I write from my point of view based on my own life and all the feedback and comments I get on my blog, from people that have read about me in magazines or seen me do my talk. There are some repeating topics and challenges that are brought up, they feel like I talk about their life, just in a slightly different way. But the discomforts are the same!

Who doesn’t like looking good? I know I do. This is something that amplifies when I get sick. I want so badly to compensate for the pain I feel with something else. That’s why I might look my best when I feel the worst. I hate this sentence: ‘Aaaaw you look so sick!’, but I hate this one even more: ‘Aaaaw you can’t be that sick when you look so good!’

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What… is it possible? Can I not be sick just because I look «pretty»? No god forbid that I try to lighten up my day with some colorful clothing, shoes or makeup. If you only knew what was behind the facade… if you only knew!

Behind the makeup, fashion clothing or designer shoes there can be a lot of blood, sweat and incredibly many tears. Pain that can’t be described in words. I don’t know how to explain it to you «healthy» people, but I’ll try. I AM chronically ill, and in my case no two days are the same. The same day doesn’t even have to be the same. An hour to an hour can be as different as day and night. The changes are so dramatic that sometimes even I can’t understand it. But with days, months and years with this illness I’ve learned to know my own body and disease. It is simply a part of my day and my live with Crohn’s Disease, I don’t know any other life. It is a horrible disease. Why? Because it is so hard to explain and you can’t see it on me.

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I will try to explain – do you know how it is like to have diarrhea? Most people do… I have it like that every day!

I will try to explain – do you know how it feels to give birth? Most women do… I feel pains and cramps like that every single day.

I will try to explain – do you know how it feels to not be able to hold it and having to run to the bathroom? Most people can imagine that or have experienced that… I have it like that every day!

I will try to explain – do you know what it’s like to bleed from your rectum? You might not be able to understand that, but that’s what I experience every day!

I will try to explain – do you know how it’s like not having an appetite and constantly losing weight? That is my ever day. I can’t gain weight. Everything I eat runs straight through me! Can’t I just eat more then? Eeeeh, if only it was that simple!!!

I can go on forever… But I won’t. I want to try to explain to you what it is like to have to fight every day. It’s an forever ongoing battle. It’s not as hard every day of course, it depends how active the disease is. And it is not the same for everyone with Crohns. I have been quite lucky/unlucky (choose what you think is most suiting) to have been affected pretty hard by the disease. I am one of the «special» cases the doctors talk about. I don’t know if I think it’s that awesome to be the one all the doctors in Norway knows about because I have had surgery so many times or been the first one to try out different medicines. WOW how lucky I am… Not to forget how special I feel! I do understand that the doctors think I am a special case and want to learn more from my life and the life of my disease, don’t get me wrong! But I’d much rather be special in a different way…

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Imagine a perfect day where the sun is shining and it’s summer. I am going to a meeting with NAV (…insert translation here). I am wearing makeup, a lovely dress and nice boots. I do of course wear my nicest jacket since I am going to a meeting! We make an effort to look good to make a good impression and feel good inside and out? Or am I talking crazy? I don’t think so. I think we all are like that. I am anxious about a very important meeting about my future. I arrive and are greeting with an arrogance and a look that says ‘Here’s someone who isn’t as sick as they claim’. It doesn’t take long before it comes: ‘You do look shamelessly good for someone so sick’. I break down in tears – no, I’m sobbing! If you only knew…

Turn back the clock a few hours… The night starts calmly, but then it just goes «boom». I wake up with bad stomach cramps that results in many a trip to the toilet. I didn’t keep count… This was before I got a stoma, just so there’s no doubt about that. I never get back to bed. I stay on the bathroom floor in between the toilet rounds, because the metres between the bedroom and bathroom are too many if I choose the bed. I’m bleeding and the cramps are so bad they nearly break me. They just get worse and worse. I am not sure I can even stand it much longer. Daniel wants to call an ambulance, but I have decided I can’t. I can’t because I have a meeting with NAV at 10 o’clock! I can’t! I won’t give up my future and my hopes for an education. Daniels holds me up while I’m on the toilet… I don’t have any strength left to keep my skinny body still. I am shivering and am freezing cold. There’s no more feces now, just blood and slime left. Exhausted and cried out Daniel puts me back on the floor where I finally fall asleep. I probably get about 2 hours sleep, then there’s 3 small kids going to kindergarten that has to get ready. Fed, dressed and all that… Daniel goes to school so he leaves before the rest of us. My stomach is still acting up, it is completely out of control. I get the kids to kinder and go back home to get ready for the meeting. I shower, put makeup on and use all my energy on looking normal. A smile can hide a lot! I have no more energy left, but what don’t you do to become «one of the guys», to fit into society. Someone who can become something… Something that many take for granted can be an uphill battle for some. But should I be punished for it? Isn’t letters from doctors and hospitals enough for them to understand what I need? Believe me, I can understand it can be hard, but whatever happened to common sense? We put on the famous mask – for who? Because we also want to become part of «everyone». If anyone is wondering this case became a long hard battle for me that ended with NAV denying me the chance at a hairdressing career. It took many years to appeal my case, byt today I am proud to call myself an educated interior consultant. But to what cost? It is not worth it! Norway fails the weakest – you have to be healthy to be sick in this wealthy country. SAD – it is just sad. What about those that doesn’t have a husband that does everything to help them! Family or friends… What can they do? They give up – it isn’t a battle that is possible to fight alone. You become impossibly small against the big system, and if you don’t fit the predefined categories you will easy fall in-between the cracks. Heard it before? Yup, it’s tragic.

For those of us with a chronic illness, something that will happen at one point or another is that we become unable to work. This is our fate, not because we want it, but because we HAVE to. We are sick, with a limitation or an injury that robs us of the liberty to work like «normal» people. And believe you me, if I got it my way I would’ve worked 110%, Did you know that already as a 16 year old NAV «offered» me to receive a disability pension. The conversation went like this: ‘Ingrid, isn’t it best you just become 100% disabled now so we don’t have to do as much paperwork later when the chances are so high that’s where you’ll end up anyway?’ What kind of work ethics and motivation is that supposed to give?! I cried myself to schooling, I refused to capitulate or accept the offer of 100% disability pension. I’ve thought about this many times since. Damn I’m happy I’ve been «strong» and stubborn all the way, fighting for my rights and what I believe in. It has helped shape me to be the person I am today.

Why do I as a sick person have to prove more than people that are healthy? If you break an arm or a leg you get full understanding right away, but when the problem is inside my intestines it is a bit hard to show it. Please follow me to the bathroom if you wish. I can promise you it is a crap disease to have – literally! I don’t wish it on anyone, and I hope that it will die out eventually. It is terrible, the pain and everything that comes with it, it is very difficult. But the real challenge is to be believed and understood! Think about it. It isn’t just people with Crohns that struggles with this, but other people with «invisible» illnesses as well. There are a lot of us.

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I’ve had to experience this as late as earlier this year. I work as a model and then there is no way you can be sick. And yes I love exercising. I am very fascinated by people participating in fitness competitions, that they manage to build up there body from zero to gold in just a few years… WOW such goal oriented attitudes and hard work, I like it. But now, I’m not «allowed» to think so. I have had some feedback that I can’t possibly be THAT sick if I like those things… Nope, well what can I do then? In any case when you stick your nose out the way I do in a small place like Norway you almost have to expect not being believed. So I have to endure more talk behind my back than others? I have to actually endure more than other people. I do actually have feelings, and I didn’t think the fact that I like sports and fashion and then post it on IG should be such a negative thing. Discussions and people with different opinions than mine is quite ok. I like discussions, and people being enthusiastic is just healthy. I take constructive criticism with ease, I have plenty of backbone!

What I don’t accept is unjustified comments and lies! Luckily only a small part of all the feedback I get are negative, most of it is positive feedback and comments. I know that I help others by being so open, and THIS is what drives me. I want to be someone, mean something for people around me! I get several hundred emails a week that are positive, and then those few negative ones directed against my weight or how I look. I don’t get it, What is wrong with people that write things like that? What are they trying to accomplish? I can’t help I look the way I do and is as skinny as I am, that’s just the way things are.

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I’d trade 10 kgs for my disease any day! I don’t want to be 50 kgs. I don’t drink 3-5 vitamindrinks every day because I want to, but because I have to. And then people see it like I’m drinking «shakes» which is are connected to dieting or bodybuilding… Aaargh I am SO tired of explaining myself! But I guess these are things I just have to endure just because I’m a blogger and put myself out there the way I do. Is that really what we want to communicate to our kids, that those choosing to work with blogging just aren’t good enough to do anything else? Isn’t it good enough? Not everyone can become a doctor or a lawyer or something «accepted» like that! I wouldn’t have wanted a different job even if my life was different. I am proud of what I do, and I believe I am helping many with my blogging, and THAT is the best feeling in the world!

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The story behind the blue stocking picture:

Read it in the next post… A picture doesn’t show everything. Either that or we just see what we want to see…!