I Don't Look Sick


As the founder of Graphic Organic I often get questions why my designs are inspired by the chronic life. I could write a book about it. But don't worry. I'm not going to put you through five pages of my emo diary. I simply want to raise awareness for invisible illnesses.

My story begins at the age of 9. I was starting to get headaches. Later followed by dizziness, tiredness and even stomach issues. I became a loyal hospital visitor and I weekly hang out with the doctors. After lots of tests (gastroscopies, never again you son of a...) I still had no answers why I was feeling those inexplicable symptoms. This went on for years. I managed to go to school but I was absent a lot. I was pretty good at hiding it too. I was too ill to have a 'normal' life but at the same time I was too functional to stay in bed.

I started throwing up quite often and my intestines were hurting. My fatigue became more intense and muscles and joint pain were added to the list. The funny thing is that every single person at school thought I was just home for fun. I have a question for you. Did you ever catch up homework from 10 days?

I've been offended many times by doctors who thought it was all in my head. Okay first of all, being the kid in school who threw up on her classmates journal is not the quote you want to see in a yearbook. Secondly, who would want to stay in bed when your friends are shopping in Oxford Street? Yeah, no one!

It got really bad. At some point I was even too tired to talk or eat. I put all my energy in school and when I came home I was completely exhausted. I couldn't do anything else. When I graduated it was time to focus on my health. I needed answers. Yes I even got misdiagnosed with chronic Lyme and got 20 infusions and 10 pills a day for nothing. I was willing to try anything in order to feel a little bit better. I was stuck. After 10 years searching for a treatment I still was being treated like I was the problem. I made the horrible mistake to ignore that I was ill. I completely acted that everything was going to turn magically out good and I would feel better soon. But I didn't realise I was totally exhausting my body. I ignored all my pains. After 2 weeks of college I went so extreme that my body had to teach me the hard way. I had heart aches and on that moment I realised that I was damaging myself. I went to another GP and finally I was taken seriously. I was send to a professor who finally (yes I used finally twice, it's been 10 years at this point) diagnosed me with fibromyalgia and M.E. (also knows as chronic fatigue syndrome). Now, I still go to physiotherapy and get medication. It was such a relief. But don't be fooled, a chronic illness is chronic. It cannot be cured. If it was possible I would do it in a heartbeat. I'm still learning every single day how to cope with chronic pain.

I often get very frustrated by people who underestimate the life of a spoonie. You know that feeling when you finally had the courage to tell someone you have a chronic illness and the first thing they say is: "But, you don't look ill."? I automatically regret I even said something about it in the first place. It makes me think about what does being sick look like?

To me, there is no definition of 'looking sick'. You don't know somebody's story just by their appearance.

It hurts that being ill in our world is associated with being weak. I can't count on one hand how many times people told me to be strong and to not think about it. That isn't going to make me better. Listening to your body is the definition of being strong. It makes me feel frustrated that they have no idea what they're talking about.

I can't fake an illness, for now 12 years. I wish I was a healthy person so I could physically do what other people my age can. I wish I was able to live a 'normal' life and do the things I want to do. I wish I could go on a spontaneous adventure without worrying about my health. At 21, your health shouldn't be your number 1 priority. Do you think I cancel my plans just because I'm lazy? I'm crying because I can't go.

I do NOT want people to feel sorry for me, at all. All I'm asking for is more understanding for those who have an invisible disease. Just because you don't see it, it doesn't mean the pain is not there.

Healthy people who are feeling tired is not the same as a spoonie who feels fatigue. Their tiredness is instantaneous and will disappear after a short nap. But the fatigue of spoonies is ingrained with them, inherent, as a part of our being. It is always there, permanently, sometimes in lesser quantities but never leaving our body. We can recover from our fatigue but it will take a lot more time and never in a total, absolute way.

I get that it's hard to understand, because even we sometimes don't know what's going on with our body.

That's it for today. I hope I could help someone out there and make you feel less alone.

I would love to hear your stories! What illnesses are you diagnosed with?

I hope you're having a low pain day,

Kirsten

#fibromyalgia #invisibleillness #ME #chronicfatigue #chronicpain

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