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How I'm Raising Awareness for ME With My Art, Heart and a Sense of Humor

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I’ve always seen myself as a funny person both in personality and in cringe-worthy social awkwardness. Although, that may not be entirely accurate in the eyes of others as I’m possibly the most introverted and withdrawn person on the planet when it comes to talking out loud in front of a crowd. But inside my brain-fogged mind, there is a whole collection of memes, gifs and internet videos and one-liners that just accidentally spill out from time to time.

It often receives some funny looks and I’m left feeling even more ashamed of myself than I did before because now everyone knows I like watching random Vine compilations on YouTube in my spare time. Spare time is one thing I now unwillingly have in bulk since becoming ill with myalgic encephalomyelitis (ME). I spend most of my days and nights trying to mask my feelings and the unrelenting pain by glueing my face to the computer screen. I now watch so much rubbish that it’s actually starting to become a concern. If anyone ever found my watch history on YouTube, I’m sorry, but I’m leaving this world and moving to the moon. As long as there’s WiFi, of course.

If I ever lose my sense of humor, please…send help! It’s a huge part of why I’ve made it this far. I’ve kept myself reasonably level this far because I always find something to smile and laugh about amongst all the chaos of living with a chronic illness. Even when I’m trapped by the pain, fatigue and just a pinch of pure misery, I can just about crack a little joke and make myself or someone else laugh.

Making others laugh or smile gives me such a tremendous feeling of joy and purpose. Especially if those people are also in some kind of terrible position with illness or mental health. My day has been briefly brightened up many times before thanks to people online who just what to spread laughter and positivity, despite all they are going through themselves. These people inspired me. They inspired me to start doing the exact same thing.

The only skill I have in my possession is creativity. It’s quite a handy skill to have when fate decides to mess with you. Turning all those tireless years of study and finally being proud of yourself, into being housebound or bed-bound with ME for the unforeseeable future. Because of my new predicament, I now use my creative skills in a positive, fun and friendly way to provide comfort and support for others in my shoes – as much as I am physically and mentally able to. This involves putting my funny side to good use. Finally, a chance for me to be my full awkward self and not feel quite as ashamed about it. In a nutshell, I joke about my own personal problems, rubbish quality of life and the hardship of living with a chronic illness. I do this in a polite, respectful and relatable way, but with the added twist of humor that brings the harsh reality of chronic illness into a new light. Not only does this way of using humor raise some much needed awareness and insight, it also provides people with a much needed giggle.

I love spreading around the idea that you are never alone in the way you think or feel. It’s normal to have these thoughts about yourself, the world and others. It’s OK to not be OK. It’s OK to smile, laugh and have some fun, even when you have a debilitating chronic condition that robs you of just about everything else.

One day I decided to come out of the shadows and cautiously step into the light. ME is an invisible disability that makes you feel incredibly lonely, isolated and misunderstood. I couldn’t stand it any longer, and I still can’t. I came up with the idea of starting something new. A small project that would allow me to combine my creativity and my illness and turn them into something more – which you can find here, on Instagram. It’s a place where I could spill out all my thoughts, create artwork and talk about my illness. I’ve met so many wonderful and brave people along the way who in turn have made me feel understood for the first time. People with a whole range of different chronic illnesses, some of which I never even knew about. It’s a fascinating invisible world with such a loving and supportive community. And now I’m one of them. I make them laugh!

I don’t claim to be anything but myself. I turn horrible situations and negative emotions into something slightly more palatable, that’s all. I will always have my moments when all the positive vibes in the universe are not enough to tame how heartbroken and devastated I am because of ME. I post about those moments too sometimes. The difference between who I used to be and who I am now is that I no longer hold back for the sake of being what’s considered normal. I no longer concern myself with the anxiety of feeling judged. By being glued to that computer screen, I’ve accidentally discovered so many people who are just like me. They are all going through the same struggles, the same draining illnesses, and just want to feel supported.

Knowing that my content has given some people a small beam of hope in such unforgiving circumstances has meant I could keep my own head above water as well. Creativity turned out to be pretty handy for me after all. So did my sensitive and amusingly uncomfortable personality. So did the sass, sarcasm and the ability to rant about everything. Seriously, I could write a whole book about the hatred I have of the often used phrase, “But you don’t look sick.”

Raising awareness for ME and chronic illness by using my art, my heart, and a sense of humor Is mostly what I’m doing with my life right now. I do this in the hope that others can follow along and feel less alone. The hope that it can educate people into realizing that it’s more than “being tired all the time” and that we fight so unbelievably hard to survive each day. I hope to carry on making artwork and talking openly about my illness as a way to inspire others to do the same. I hope to bring laughter into the lives of those who need it most.

I hope that one day I’ll look back at all this and be proud. Proud that despite it all I somehow carried on fighting. Carried on laughing my way through the darkness.

Follow this journey here.

Getty Image by ASIFE

Originally published: June 22, 2018
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