Sharing the struggles of MS, the ‘invisible disease’
I am one of more than 1 million
U.S. citizens living with an autoimmune disease, known as multiple sclerosis. I was diagnosed in
2018, and then my oldest sister was diagnosed in 2020. Our symptoms overlap in some ways, yet differ in others. My main challenge began in my eyes, causing complete blindness in my left eye in less than a week. She lost feeling in her arms and legs. But, we also share many common symptoms, like fatigue, pain, brain fog, and mobility limitations due to similarities in the location of nerve damage.
MS is an “invisible disease” that affects the central nervous system. The immune system attacks the myelin coating of nerves in the brain and spinal cord, eventually causing lesions. These lesions grow over time and cause irreparable harm to the patient. Take a moment and think of the job of our central nervous system — what does it control? Everything. That means every element is eligible for damage and degradation. Vision, muscle movement, bladder and bowel control, cognitive function, numbness, and coordination are just a few of the challenges I face regularly. Factors like heat and stress increase my symptoms, imitating a relapse. As of now, there is no cure — only management of symptoms and disease modifying therapies that can slow its progression. MS is a lifetime commitment to one’s health, forcing each patient to reshape their entire identity around this disease.
I divide my life in “Before MS” and “After MS” — before MS I was a high school teacher and coach, highly active, constantly challenging myself physically and mentally to be the best version of myself possible. I resigned from teaching after completing the school year of my diagnosis.
The daily requirements of my chosen profession became too big, too difficult and too overwhelming. It took my sister’s diagnosis to wake me up and remind me that there’s still something and someone worth fighting for. Years of physical therapy, medications, and acceptance have helped shape my “After MS” identity. I share my struggles publicly because there are many who aren’t comfortable in that role. The only way to make our invisible disease visible is by raising awareness.
March is MS Awareness month, with March 10-16 being MS Awareness Week. The City of Orlando is helping to raise awareness by lighting orange the Kia Center Spire, Lake Eola Fountain and Lake Lorna Doone Park Fountain. Cities around the state, like Minneola, are also proclaiming MS Awareness Week. Businesses, like Ocoee’s DG Donuts, are helping raise funds for Walk MS: Orlando, held in Blue Jacket Park on April 13. And individuals throughout the Greater Orlando area are wearing orange, raising funds and spreading awareness with their personal stories.
Multiple sclerosis made me feel like a stranger in my own body. It takes and takes, relentlessly stealing little pieces of my identity and self-worth. I had two choices: give up or give in. I chose the latter and have made it my mission to advocate for awareness and understanding. I gave in to the fact that there is no cure … yet. I leaned in to the idea that every discovery starts and ends with action. Odds are you may know someone living with MS. If so, I challenge you to reach out to them between now and the end of March and let them know you’re supporting them. Little actions like these may just be the spark to the next discovery on our path to a cure.