My MS Story

“But you don’t look sick.” Those are the famous last words I’ve heard time and time again in my health journey. A phrase accompanied by comments about how I’m “too young,” “too healthy,” or “too athletic” to have X problem.

Yet here I am: 33 years old living with multiple sclerosis, autonomic dysfunctions of the cardiovascular and GI systems, a rare blood clotting disease, a compromised liver, and chronic migraines.

But everything is fine.

When I was diagnosed in January of 2019, I didn’t know anyone with Multiple Sclerosis. All of the people around me seemed to “know somebody” — a distant cousin, a friend’s neighbor’s sister — but their idea of what MS looked like usually involved people who were strictly bedridden, and then they would proceed to tell me how that person had passed.

I got a lot of sad puppy dog eyes from the people around me during this time in my life. The look people give you when they don’t know what to say but feel really uncomfortable with the direction the conversation just took. I never saw my diagnosis as a promise of bad things to come, but it was clear that the people around me did.

I didn’t want that for me.

I was lucky that someone I knew did happen to have a close friend who was thriving with MS and had been for the last 20 years. She had a beautiful family, a successful career, and was living her best life despite her Multiple Sclerosis. We were quickly introduced, and Jennifer took 4 hours out of her busy schedule to talk with me on the phone. She answered all my questions, even answered ones that I didn’t have but she said that I probably would soon (… and she was right). She gave me advice and things to look out for. She was the sunlight peeking through in the middle of the storm.

After we hung up, I made a promise to myself and to her kindness that I would pay it forward and be that person for someone else. If the face of MS was changing, and more and more individuals in their 20s and 30s were being diagnosed, then there would probably be more people like me who craved a peer and some hope. A friend who understood exactly what we were going through as young adults and new parents, who had hopes and dreams for the future, and just wanted to live their best life possible given the circumstances.

I started blogging and sharing about MS on social media. It was cathartic for me to release my thoughts and frustrations to the universe, but it quickly became evident that others felt the same way. Within a month of my first post, a friend reached out to me — because HER friend was just diagnosed with MS and she wanted to put us in touch. And in that moment, I became her Jennifer, and the cycle repeated.

Since then the ways I have shown up online have changed. My instagram channel, which started as a fashion and beauty lifestyle channel for moms, has morphed into an invisible illness advocacy channel. The more I shared, the more friends I met, and the more I realized that we all live our MS journey’s with 1 common goal – to live as normal a life as possible and to enjoy doing it. We don’t want to be limited by our disease, we want to find accommodations for it and continue to do the things we love in spite of it. And we definitely don’t want to be judged by the way we may or may not appear on the outside.

My journey is still unfolding but I’d like to think that I’ve found a good bridge between my interests. “Sick not ugly” has become a mantra to share the gentle reminder to not judge books by their covers— that we are more than our diseases. And to empower us all to continue to pursue the things that set our soul on fire, no matter the curveballs life throws at us.

Nobody should have to walk alone with something like Multiple Sclerosis.