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Finding creative outlets while living with myasthenia gravis (MG) can be difficult because of limited energy, mobility, or even accessibility. Yet, having some sort of creative release is important for everyone, especially when dealing with the challenges of coping with a serious disease.

In the last year and a half, I have rediscovered my love for watercolor painting. I have found it to be a meditative and expressive way to be creative that fits within my limitations, and it has given me some creative spark back.

Art and creativity have always been at the center of my life. I have always been a writer. My degrees are in literature, and I worked as a visual artist for years when I was an undergrad, and I am also a musician, who used to perform regularly (before my disease made that impossible). I still play piano when I can, but I run out of energy very quickly with that.

Read about the diagnosis of MG

But since I have started painting again, I am able to do that from my chair. I love painting nature-inspired work and can put some music on and work on a piece in stages while resting in between. Sometimes I am even able to do some artwork during the long days of my infusion therapies, which helps me pass the time and cope with it. 

Painting helps my fatigue some, but mainly it helps distract me from pain and discomfort related to my disease and treatment. It helps me escape my symptoms and focus my mental energy for a short time on something else. When a piece is done, it feels like a real accomplishment. 

Creating paintings again has helped me reconnect with a visually artistic side of myself I haven’t really used since I used to work as an artist almost 20 years ago. If I had never been diagnosed with MG, I would still be teaching English and playing as much music as possible; I likely would not be painting much. That just isn’t where my creative energy was focused. Yet, in some ways, my disease gave this back to me, and I am grateful to have found it again.

I love giving away my artwork to family and friends and even have pieces displayed all over our house. I can’t imagine I will stop painting any time soon. This passion has been such a therapeutic source of joy and escape. 

Art and beauty remind us we are human; they are central to the human condition and therapeutic to our spirit. We all have the desire to express that. It’s important for rare disease patients to find a creative outlet that fits within their limitations, so they can be reminded they are much more than their experience as a patient. They are an individual with the creativity to contribute in whatever way they are able.