Making the 'invisible' visible

When I was thirteen years old, I had my first clear Multiple Sclerosis (MS) symptoms. I was officially diagnosed in 2010, at the age of fifteen. Many people aren’t aware that there are pediatric cases of MS. According to the National MS Society (USA), only about 3-5% of people with MS will experience their first symptoms before the age of 16. Due to the overall lack of pediatric MS awareness, I’ve faced a great deal of skepticism as a “healthy-looking” young woman, which has been disappointing and frustrating. However, I was able to develop a way of addressing this through my artwork.

I have been an artist my whole life. Over the years, I learned how to use art as a tool to share different perspectives, and I began to make paintings and drawings about my experience with MS. At first I was hesitant to share so much. After all, it can be difficult to ignore people when they say things like, “You can’t be sick – you look so healthy!” In the end, though, these comments are what inspire my work.

Last year, I decided to start painting my first MRI scans. My goal was to provide ‘proof’ of my disease. While other people can’t see my fatigue, blurry vision, or balance issues, they can see the evidence of physical damage in the scans. Each white spot shows where my immune system attacked the myelin in my brain. Working from images as small as 400 x 300 pixels, I painted the scans at approximately the same size as my head to provide a greater sense of realism.

As I continued to paint, I found that I wasn’t just proving my disease to the world; I was also proving it to myself. For years I had felt guilty about my diagnosis, especially when I was a teenager. I wondered if maybe people were right – maybe I am too young to feel this tired – maybe the dizziness is all in my head – maybe I just need to take a nap – maybe I really am fine because I ‘look fine’. But by studying my own scans, I was studying why everything I felt was real.

Other MS patients have been able to relate to my paintings as well, and I’m thrilled with the feedback I have received. I also often hear from people who aren’t familiar with MS, many of whom have said that they learned something from my work. This has helped me understand how I can use my art as a way to spread awareness. In addition to my MRI paintings, I also create work that depicts my experience with healthcare. These paintings share how I view routine visits to the doctor, and how spaces once perceived as frightening can grow to feel comfortable.

I have often been told it’s unfortunate that I was diagnosed so young. At first, I agreed completely. But when you have an unpredictable and chronic autoimmune disease, you have to focus on the positives. I did miss out on a lot during my teen years, and since I only had the energy to take classes part time, my undergraduate degree took six years to complete. However, because I was diagnosed young, I was able to build my life around my diagnosis. I was able to start treatment early, and my current medications are working well. I was able to reach out to people who had similar struggles and learn how to make the best of my situation. I am able to show children and teens diagnosed with MS that they can still go to college, work, and live a fulfilling life, despite their disease.

Now, at age 25, I am pursuing my Master of Fine Arts degree. I recently decided to create paintings that show the progression of my disease over the years, rather than just individual MRI scans. My goal is to continue to connect with people in the MS community and promote awareness with my art. I want to remind people that ‘invisible’ MS symptoms are real, so it’s okay to speak up and be honest about what you’re experiencing. And if you ever start doubting yourself, it can help to remember this: there is proof in the scans.

You can keep up with May Ling via her Instagram @mayling.k and websitewww.maylingkopecky.com