My Journey with MS: 10 Year Anniversary (Part 1)
This is me.
I don’t look sick, do I?
If you meet me in person, you probably wouldn’t guess that I live with a chronic illness.
I have relapsing-remitting multiple sclerosis (MS). MS is a central nervous system disorder that damages the nerves and the myelin, which is the fatty substance that surrounds the nerves. It’s considered an immune-mediated disease, which basically means that my body makes a mistake and attacks parts of itself that are meant for protection. MS can affect speech or gait. It can cause spasticity. You might have seen Selma Blair’s inspiring 2019 interview with Robin Roberts. The effects of multiple sclerosis were apparent.
But MS can also be an invisible disease, which means you might not see it, but it’s there. Like I said, I don’t look sick. I don’t know how many times I’ve heard, “but you don’t look sick.” But there are a lot of symptoms that aren’t visible at a glance — fatigue, numbness and tingling, vision problems, sexual issues, not to mention depression, memory challenges or “brain fog,” and more.
My MS Origin Story
I was diagnosed in February 2011. I was 23 years old, in my last semester of graduate school for graphic design at the Savannah College of Art and Design. Some numbness and tingling in my mid-section had been diagnosed as a pinched nerve, but when the sensation spread throughout my whole body, I panicked and went to the ER. By some great stroke of luck, the doctor I saw there had recently read an article on multiple sclerosis being misdiagnosed as pinched nerves. He suggested I see a neurologist.
“I really don’t think you have MS,” the neurologist said, and posited that my symptoms were likely due to anxiety. This is something that happens to women a lot. Our physical pains and illnesses are chalked up to being psychosomatic and often dismissed. Fortunately for me, in spite of his doubts he kept investigating. If he’d tried to send me away, I’d like to think I would have insisted that he do a test, or kept persisting with more doctors, but the truth is I don’t know if I would have had the fortitude to keep on advocating for myself back then. It’s certainly something I’ve spent time learning to do over the last decade.
I don’t know why my neurologist, who thought it was all in my head, did an MRI but I’m glad he did because they were able to catch the MS right away. It was early and the disease hadn’t progressed. My doctor assured me that many of his patients were fully active, thanks to emerging treatments but the diagnosis and the whole process was a shock to my system and my spirit. I definitely did my fair share of crying in the Wendy’s drive-thru line listening to “Come Sail Away” by Styx while waiting for my fries.
My Life Changed
One of the first things I learned about MS was that stress can contribute to relapses. I was in grad school at the time, and anyone who has gone to grad school knows it’s not a stress-free time. I had to learn to make my health a priority which, let’s be honest, is not the mindset of a lot of 23-year-olds. I wanted to kick ass on my MFA thesis on branding and spirituality, which involved a visual component of building a giant dream catcher that took up the entire floor of my living room, even if it meant pulling all-nighters every week. I wanted to try new beers with my friends at Savannah’s historic Crystal Beer Parlor, not go to bed early and adopt a vegetarian diet (I’m sure it works for some people, but I need meat for energy). I had been able to rely on my body without much effort and now I had to learn how to take care of it.
Still, MS can make my daily life unpredictable. I’ve learned a lot about treating my body well so it behaves -- through light exercise like walking and gentle yoga, acupuncture, and taking care of my mental health, which includes sharing my MS story — but there are still days I wake up with no energy and I don’t mean in an “I need an extra cup of coffee” kind of way. On those days, I try to keep the ball rolling with as little effort as possible. I sit outside in my yard, I might read articles or watch a documentary to inspire me in my work, but otherwise I try to unplug and take the time I need for restoration.
How I Make it Work for My Work
Running your own business has its stressors, but one benefit is that I make my own schedule. By being clear with myself about my obstacles and committing only to what I know I can follow through on, I am able to meet my deadlines and get things done for my clients. This means taking projects that aren’t rush turnarounds so I have the flexibility in my schedule to take a day off if I need to rest. It means setting clear boundaries about how and when to contact me so I’m not getting work texts outside of work hours when I need to recharge. It means making myself NOT check my email at night. It also means focusing on projects that fill me up with inspiration and joy rather than projects that can drain me more than everyday tasks already do. I spoke about running a small business while living with a chronic illness like MS to my friend Melanie Padgett Powers on her podcast, Deliberate Freelancer. Listen to my interview with Melanie here.
Finding Comfort
After my MS diagnosis, it took me a long time to feel comfortable in my own skin again. I didn’t know what to expect from my body or how it was going to be. There were a lot of question marks and fear of relapses. I felt a lot of uncertainty. Living with MS has forced me to learn how to be more comfortable in life’s imperfect moments. I had to learn how to be more compassionate with myself, and that’s allowed me to be more compassionate with others who may be having a hard time, whether it’s my friends, my family or my clients.
In the 10 years since my MS diagnosis, I’ve had to learn to be more flexible in how I schedule my time, set goals and define success. These are lessons I may have learned much later in life if I were taking my health for granted. Having restrictions on my time and energy has helped me focus on the things that are most important to me, like serving my clients, being close with my husband and my family, and being connected to my local community.
The National Multiple Sclerosis Society has become an important part of that community. NEXT WEEK, in part two of this special two-part blog, I’ll tell you all about how I got involved, how I use my graphic design skills to help fundraise, my WALK MS team, and what the National Multiple Sclerosis Society means to me. In the meantime, you can learn more and DONATE here.
CHANGEMAKER OF THE MONTH
For this month’s change maker of the month, I’m spotlighting and donating to the National MS Society, an organization whose mission is for people affected by MS to be able to live their best lives as we stop MS in its tracks, restore what has been lost and end MS forever. I’ve personally benefited from their support, resources, and research efforts over the years and always donate this time of year to kick of my Walk MS fundraising.