See M.E through the eyes of creatives
Exhibiting ART, WORDS, SONGS and FILMS of M.E by patients and carers from around the world. Expressing the pain, hardship and grief that Myalgic Encephalomyelitis brings to the lives of millions.
The story behind the See ME Expo began when I was invited to display my Elephant and ME illustration at an art expo in Belgium in 2019. It was after that when I realised the event organiser, Dascha, was so severely afflicted with ME and bedridden 95% of the time, wasn’t able to attend the expo. She’d coordinated the entire event from her bed using a laptop without being able to enjoy the final result.
That’s when the idea of a virtual art exhibition for ME was born, so people who are homebound or unable to travel can still enjoy the expo experience online.
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Kunst Expo banner from 2019 |
Dascha was a clinical psychologist and behavioural therapist before becoming mostly bedridden due to ME. At the moment she’s completely bedridden and lives in a dark room in an assistance care house.
Dascha is a board-member and co-founder of 12ME, a Belgium group for advocacy and awareness. While bed-bound, she organises events and brings patients together. She has a special interest in art as a way of expressing, reaching and advocacy. When Dascha first became ill she painted rock art to help raise funds for research.
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| Click image above to read article in English |
After Dascha’s health deteriorated she was no longer able to paint, however she finds comfort in the art of others and has since joined me as a collaborator of our See ME Expo Pinterest board. This is so we can include more artists from Belgium and beyond.
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Out into the world by Dascha |
I’m an Australian illustrator and graphic designer by profession and was living my dream illustrating children’s books when I fell ill overnight in 2013 after catching a virus. The following year, I was diagnosed with ME/CFS and UCTD (an autoimmune connective tissue disease), which was triggered by the same virus.
I had kept my health problems to myself until I realised keeping quiet about my diagnosis was not only doing myself a disservice, but was also contributing to the invisibility of millions of people with ME. Since then, my goal has been to help make ME visible to the world by utilising my creative skills.
At the moment, The See ME Expo Pinterest board will be utilised as an ever growing creative pool to draw from. I’m currently building the See ME Expo website and will host special exhibits featuring artists and collections from the Pinterest board. Each exhibit will have an ‘entry ticket’ at the top asking for an optional donation to the artist’s chosen ME charity to help raise funding for advocacy or research.
This project may take me a long time between ‘rests’ so I haven’t given myself a deadline. In the meantime, everyone can enjoy the creations in the Pinterest galleries.
My goal with hosting special exhibits is to create an engaging and entertaining way for family, friends, medical and social communities to learn about ME/CFS plus co-morbid illnesses such as dysautonomia. And to help patients feel more understood and less alone. This can be a terribly isolating illness due to the lack of understanding and education from healthy people and the medical community.
I also hope the exhibits and Pinterest board will inspire more creatives with ME to express their experiences through art despite their limitations. A simple line drawing, a quote, a photograph or movie clip from bed can be incredibly powerful and can give the creator a sense of purpose and achievement, even if it’s not up to their pre-illness standard.
There are many losses we feel due to the limitations of our body, and we must do everything possible to help patients not to lose sight of meaning, purpose and the light they still bring to this world, despite many being isolated in darkness.
The See ME Expo will hopefully enable their work to be seen and appreciated, to touch others going through the same and help people to understand the true gravity of this illness.
At the moment we aim to ‘pin’ one or two creations at a time whenever we come across an artist who has expressed what ME is like through their art, photography, words, songs or films. The creation must be an expression of life with ME. It can be anywhere from your darkest moments to your brighter, happier ones. We try to link each image to the creator’s website, blog or article, so the expo visitor can explore more about the creators they’re interest in.
A call out for artist, photographers, writers, musicians and film makers
If you’re a person with ME, or a carer of one, and you’ve created something expressing your experiences of how ME has impacted your life or loved one, I would love to hear from you. Simply email Amanda at seemeexpo@gmail.com with a link to your creation if you have a website, blog, or have shared on social media. Alternatively, you can attach your image with the title and name you wish the creation to be called and credited to. Currently, I’m pinning creations to our Pinterest Board and making a list of creators who wish to participate in future exhibits. Creators retain copyright ownership of all creations shared on our Pinterest Board, the See ME Expo website and this blog.
All creations must be the original work of the creator and reflect life with Myalgic Encephalomyelitis or Chronic Fatigue Syndrome. This invitation also extends to those people who are still undiagnosed, but have the hallmark symptoms of ME. We understand it can take years to get a diagnosis due to the lack of medical education. Some patients wait decades or are never officially diagnosed.
First, I illustrated an animation of myself wading through wet cement while tethered to a stubborn elephant and wrote about my own health struggles on my art blog.
A little while later, I designed the ME Advocacy Network Australia (MEANA) logo and started up my own ME awareness blog, Illustrator Interrupted.
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Elephant and ME animation |
A little while later, I designed the ME Advocacy Network Australia (MEANA) logo and started up my own ME awareness blog, Illustrator Interrupted.
This project may take me a long time between ‘rests’ so I haven’t given myself a deadline. In the meantime, everyone can enjoy the creations in the Pinterest galleries.
See our pictures, read our stories, listen to our songs and watch our films.
My goal with hosting special exhibits is to create an engaging and entertaining way for family, friends, medical and social communities to learn about ME/CFS plus co-morbid illnesses such as dysautonomia. And to help patients feel more understood and less alone. This can be a terribly isolating illness due to the lack of understanding and education from healthy people and the medical community.
I also hope the exhibits and Pinterest board will inspire more creatives with ME to express their experiences through art despite their limitations. A simple line drawing, a quote, a photograph or movie clip from bed can be incredibly powerful and can give the creator a sense of purpose and achievement, even if it’s not up to their pre-illness standard.
There are many losses we feel due to the limitations of our body, and we must do everything possible to help patients not to lose sight of meaning, purpose and the light they still bring to this world, despite many being isolated in darkness.
The See ME Expo will hopefully enable their work to be seen and appreciated, to touch others going through the same and help people to understand the true gravity of this illness.
At the moment we aim to ‘pin’ one or two creations at a time whenever we come across an artist who has expressed what ME is like through their art, photography, words, songs or films. The creation must be an expression of life with ME. It can be anywhere from your darkest moments to your brighter, happier ones. We try to link each image to the creator’s website, blog or article, so the expo visitor can explore more about the creators they’re interest in.
A call out for artist, photographers, writers, musicians and film makers
to join our online art exhibition
If you’re a person with ME, or a carer of one, and you’ve created something expressing your experiences of how ME has impacted your life or loved one, I would love to hear from you. Simply email Amanda at seemeexpo@gmail.com with a link to your creation if you have a website, blog, or have shared on social media. Alternatively, you can attach your image with the title and name you wish the creation to be called and credited to. Currently, I’m pinning creations to our Pinterest Board and making a list of creators who wish to participate in future exhibits. Creators retain copyright ownership of all creations shared on our Pinterest Board, the See ME Expo website and this blog.All creations must be the original work of the creator and reflect life with Myalgic Encephalomyelitis or Chronic Fatigue Syndrome. This invitation also extends to those people who are still undiagnosed, but have the hallmark symptoms of ME. We understand it can take years to get a diagnosis due to the lack of medical education. Some patients wait decades or are never officially diagnosed.