It’s March Awareness Month for Member States.
As he told you Shannon Shelton Miller
In 2016 I discovered the world of aerial arts. A friend posted on social media about the class and when I arrived, I was cornered by a typical gym. But there were beautiful silks in that corner, and I was obsessed with the art from the beginning.
Four years later, I was under significant stress after moving out of state and working a difficult job. I woke up one spring day and couldn’t feel anything from my belly button down. I was so type-A and such a workhorse that I still got up, opened my laptop and went to work. I didn’t tell anyone how I felt and just thought I must have been sleeping in a weird position.
Throughout the week, however, the numbness continued to spread, moving from my legs up the left side of my body to my face. I also had vertigo and it was affecting my vision. I knew something was wrong.
I called my GP but this was all happening during Covid so my appointment was virtual. She listened to me and even spoke to a colleague who had studied neurology and suggested I get an MRI. Looking back, I feel so lucky that I ended up with this provider — she and her colleague were both grad school, and I think that’s why they were willing to listen and dig deeper.
The wait for the MRI appointment was three months due to the Covid backlog. It felt like forever and my symptoms continued to progress. One day I found myself dizzy and could not get dressed without falling. My fiance helped me get dressed and drove me to the emergency room.
At the ER, I urged them to do an MRI, but an older doctor responded with “Sometimes women get dizzy.” He leafed through notes on my case and, seemingly out of the blue, added “If you think it’s MS, you don’t have textbook symptoms” — and sent me home.
When I heard him mention MS, it was the first time I realized that this could be serious. At the time, I didn’t know what MS was and my mind went to the worst case scenario. I thought my dreams of aerial and teaching were gone. I even thought I was going to die soon. I told my fiance that he didn’t have to stay with me through all of this since we weren’t married. If she wanted out, I understood.
We ended up getting married later that week. I didn’t know why I was trying to push him away. I guess I was scared, but he wanted to be there for me as my rock and support system, which he was from the beginning. It didn’t hurt that his health insurance was better than mine and we had a feeling that no matter what I was going through, my treatment would be expensive.
Once I had the MRI, I was diagnosed with relapsing-remitting multiple sclerosis. The MRI revealed numerous lesions in my brain and spinal cord. I have since had neurologists across the country look at my case and they all agree on the diagnosis.
2025 (Photo/David Tuman)
In order to continue aerial arts, my body has built neural pathways around the damage, so I’m slow to process information sometimes – a message from my brain to my leg has to travel further around the damaged areas.
I am now 35 and although I have been relapse free for five years, my balance is definitely affected. I’ve had two falls in the past year, but it took five years to get over that. I know everyone’s MS journey is different, but I had such a sudden, aggressive onset of symptoms that I was put on a highly effective, powerful disease-modifying treatment from the start, which helped me recover from that initial relapse.
I’m excited to still be able to do aerials, but I’ve learned to make adjustments and communicate when something goes wrong. If I get dizzy, I won’t go up in the air for safety reasons. I’ll stay low in a fitted silk and do more yoga or stretching over dance and flow. When I teach a class, I am very open with my students and the studio where I teach, Aeriform Studio. It is a very supportive and welcoming environment.
When it comes to aerials, people often tell me they wish they could do what I do. I think the pictures people have taken make me look really cool and some days I can do really impressive things. Other days I can’t, and this year, I’m trying to share more of my recovery and those slower days over my art photos and videos that don’t reflect my everyday life.
To me MS is an invisible disease, but I live with its effects every day. Before my diagnosis, I didn’t do a good job with communication, which is ironic considering I have a master’s degree in communications. I learned that I need to communicate my needs, which might include asking my husband to walk the dogs in the morning because I’m feeling dizzy, or finding a parking space at my full-time job.
Living with MS has forced me to slow down and listen to my body. In my current advocacy work with MS organizations, I always tell people that you know your body best. If something doesn’t work, talk to your healthcare provider. If they don’t listen, see a different health care provider.
Your health is the most important thing. Keep going until you find someone who will listen. Standing up for yourself can be absolutely exhausting — but it’s worth it.
Do you have your own real women, real stories to share? Let us know.
Our real women, real stories are the authentic experiences of real life women. The views, opinions and experiences shared in these stories are not endorsed by HealthyWomen and do not necessarily reflect the official policy or position of HealthyWomen.
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