Today, May 12, marks International Awareness Day of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS), Fibromyalgia (FM), and Post Treatment Lyme Disease Syndrome (PTLDS). To commemorate this important date, we are honored to share a beautiful film about life with ME/CFS made by Inga Topolnicki, a person with ME/CFS, OMF supporter, and advocate.
Last year, during OMFCA’s 2020 May Momentum campaign, OMF first shared Inga’s story. She told us, “For the past few years, I have been using what little energy I have to work on a paper stop motion film called “An Existence Project.” The purpose of this film is to portray what life is like for someone living with a moderate form of ME/CFS. Much work needs to be done to communicate the serious nature of this illness to the public, and I hope my animation will play a small part in creating this change.”
We are excited to update that Inga has completed her stop motion animation film, “An Existence Project!” Watch it now.
Inga Topolnicki, creator of An Existence Project.
Recently, OMF had the opportunity to interview Inga about her film, advocacy work, and life with ME/CFS.
How long have you had ME/CFS?
I’ve had ME/CFS for seven years now, but I was sick on and off for eight months following a viral infection while on a university exchange program in France.
What inspired you to create the stop motion animation video?
When I was first diagnosed with the illness, the only resources I could find online about living with ME/CFS were lists of symptoms. I couldn’t find anything that dealt with the complex emotional challenges we are forced to confront when diagnosed with such a horrible, life-altering illness. I was grieving for the loss of the life I had been lucky enough to lead and knew that I needed some way of communicating this.
I also knew that there were many people in the same situation as me or an even worse one. I thought that a short animation would be something accessible we could show our family and friends. Visual metaphors have a fantastic ability to communicate a more nuanced and impactful picture.
What was the biggest challenge you faced in creating this video?
The biggest challenge I encountered, by far, was figuring out ways to pace the production of it while dealing with my ME/CFS symptoms. There was a year when I was mostly bed and housebound and couldn’t work on it at all, and many other scattered months when working on it was impossible for my body. It was such a long-term project that sometimes I thought I would never be able to get it done, but I learned how to break each task down into minute pieces, and it was motivating to see it slowly coming together.
How long did it take you to create this video?
Because of these challenges, it’s taken me six years to finish it! I made all the watercolor paper props myself, shot all the footage, did the image editing and post-production, and wrote and recorded the music. Now that it’s done, it feels worth it because I have learned so much along the way.
What do you most hope to accomplish through sharing your video?
Chronic illness isolates us physically from others but also from society by a lack of understanding. I want this film to help connect people again from a place of mutual understanding. It is challenging for someone who has not experienced this illness to grasp the idea that it impacts every aspect of your life, every single day. I hope this film will help people to see how tough even mild or moderate ME/CFS is to live with.
We would like to extend our sincere gratitude to Inga for using her limited energy to create this beautiful film to help raise awareness of ME/CFS. OMF is proudly featured at the end of the video, and we do hope you can find this to be a valuable resource to share with your personal community.
Inga also adds,
“The video now has subtitles in 8 different languages: Dutch, Korean, Chinese (Simplified), Swedish, German, Spanish, Norwegian (Bokmal), and English. The other languages that are hopefully coming soon include Russian, Italian, French, Greek, and Polish.”
To help the broader community better understand ME/CFS, Fibromyalgia, and Post Treatment Lyme Disease Syndrome, we recently updated our website! These pages include information on disease symptoms, diagnosis, and current OMF-funded research:
We hope these can be a valuable tool that you can share to help educate your personal community — family, friends, and medical professionals.
Don’t forget to also check out OMFCA’s resource center! This page includes information for parents, patients, or to share with your doctor, and much more.
We hope you find these resources helpful in navigating the challenging world of chronic, complex diseases.