Creativity has a unique way of healing, empowering, and connecting us, especially in the face of life’s challenges. For many in the MG community, artistic expression is not just a hobby—it’s a form of resilience. Whether through painting, beading, sewing, or crafting IV pole decorations, creativity allows individuals to adapt, find joy, and reclaim a sense of control in their lives. In honor of National Craft Month, we’re highlighting the stories of talented "Muscle Makers" who have found ways to keep creating, despite the challenges of myasthenia gravis. Their journeys remind us that art is not about perfection—it’s about expression, adaptation, and the joy of making something uniquely our own.
-Florence
I used to be able to do very fine detail work. I loved to bead and do embroidery. I don't have the muscle control or vision I used to, so I turned to quick cheap mini canvas art with acrylic paints. I think humans are all meant to create, we are all meant to produce beauty so even though my art isn't technically impressive or artistically advanced I'm still proud of it. It gives me so much pleasure compared to scrolling on the phone or Netflix. Sadly, Instagram and social media has made us have too high of expectations of ourselves, we want to produce perfect curated pieces, but anything we make is a triumph and worthwhile and we can always improve on the next attempt!
-Lisa
After being diagnosed with MG 1 year ago, I’ve become much more aware of what my body can and can’t not do at any given time. And while the unpredictability of symptoms can be challenging, I’m learning to slow down, pause, pay attention, and practice gratitude.
One example of modifying a hobby I’ve enjoyed for many years is making jewelry. Working with small seed beads isn’t as easy as it used to be, so now I use larger beads, crystals and even thrifted pendants to create my pieces!
Something new I’m trying is painting with watercolors. Experimenting with colors and brush stokes is playful and fun. Painting doesn’t require as much physical energy as some of the activities I enjoyed doing before MG (like walking) and when the weather is nice, I’m able to paint on my patio and still enjoy being outdoors in the sunshine ☀️!
-Susan
My name is Susan & I was diagnosed with MuSK + MG in July 2019. I started with IVIG infusions almost right away. I didn't have many options due to my subtype & what we tried didn't work or I couldn't have certain medications. So, in October 2022, on Halloween, I started on Rituximab. I have my IVIG infusions at home but need to go into the infusion center for Rituximab. I was hesitant to start Rituximab & was really nervous. My home infusion nurse surprised me & got me a skeleton to hang on my IV pole for my first Rituximab infusion. This is what gave me the idea to make IV pole decorations. I'm a crafty person, so this was up my alley & I can use my skills to make different things! I also crochet.
I've made about 13 decorations based on seasons & some of my decorations are holiday related. I use my decorations for all of my infusions & I like to surprise people which ones I'm going to use for each infusion. I take pictures of them at each infusion & send them to people. It brings joy to me & other people who see them. It makes me feel proud that I can do this. It changes the scenery & mood to me & other people. It makes things unique. People always ask me what's next or what are you going to use? When I'm in the infusion center, doctors, nurses, & other staff always come to my room right away to see what I have for that day! It makes patients smile behind their masks, when I walk down the hall. One of my friends said that it makes an unpleasant situation more of a pleasant situation.
My beehive decoration is one of my favorite decorations & close friends have wanted one to put in their homes. So, I would surprise them & make them as holiday gifts for those people.
I've also learned that different IV pole decorations look different on different types of poles, so it's unique.
This is how MG has expanded my creativity!
-Bryan
I’ve always had a flair for artistic expression—sewing, acting, dining, dancing, sculpting, and more. Creating has always brought me immense joy, and being able to design and bring to life the ideas in my mind has been deeply fulfilling, especially knowing that they have brought happiness to others.
When I first started experiencing symptoms of MG, I noticed I could no longer fully engage in many of my creative outlets. Most of my activities had to take a back seat as I managed my symptoms. Minimal sewing projects were all I could manage, and even then, I had to take frequent breaks. It took me months to complete even small projects, like sewing a dragon or a blanket, until I stabilized on treatment.
During this time, I often wondered how others living with MG expressed their creativity. Did they have to adapt their methods or find new ways to pursue the joy of creating art? I rarely saw or heard stories about how others with MG continued to nurture their creative passions.
This led me to dream of creating a community where we could come together to share our accomplishments and inspire one another. A space where we could exchange creative ideas, collaborate on projects, and offer tips and tricks—both for the days when we feel strong and for the days when MG symptoms are more pronounced.
-Christina
As a child I could do just about anything physically I wished. And as I was competing for a spot on the volleyball team in 7th grade, my body began to fail me. Since then, there has been so many ups and downs and finally acceptance and lifestyle adjustments. I now fine that my hobbies save me. I do beaded embroidery, and I quilt. I have just participated in my local quilt guild event this past weekend. Now the extra effort did test my limits, after the 3-day event I had 2 crash and burn days, but I'm back now.
1st picture is the beading that can do while my chair is my only friend. 2nd and 3rd pictures are the quilts I submitted for the show. People in the 3rd picture are fellow quilt members. I quilt when I have a little more energy to get out of the chair and move. I do have to take breaks when quilting.
Creativity knows no limits, and neither does the support of the MG community. Whether you’re painting, crafting, sewing, or finding new ways to express yourself, your creativity is a testament to your resilience. If you’ve been looking for a space to connect with others who share your passion for art and crafting, we’d love for you to join our Virtual Muscle Makers Group! This welcoming community is a place to share projects, swap ideas, and find encouragement from others who understand the challenges of MG. Keep creating, keep inspiring, and remember—you’re never alone on this journey. Learn more and join us at mgakc.org!
Comments