What I Wish People Understood About Multiple Sclerosis

In honor of Multiple Sclerosis Awareness Month, we chatted with Jenna Green, a multiple sclerosis warrior, and Mighty Well® brand ambassador. Jenna is a small business owner, blogger, and passionate multiple sclerosis advocate. She had a lot of great insights about MS that others would greatly benefit from knowing if they have a loved one or friend living with multiple sclerosis:

1. What do you wish people understood about multiple sclerosis?

“When I was diagnosed with MS four years ago, I hardly had any idea what the disease was. The reality is that despite amazing scientific advances, doctors still don’t know what causes MS, how to predict disease progression, or how to cure it.

I wish that people understood that MS is different for everyone, and even more perplexing is that MS can be different day by day for each individual. What worked well for your mom’s hairdresser’s best friend with MS may not work for anyone else. Some of us diagnosed with MS will run marathons, and some will struggle to get out of bed. And many of us won’t even know how we will feel on each given day. 

Does that mean you’re doomed to a miserable life if you’re diagnosed with MS? NO! You can absolutely live a life you love, but you’ll be much more successful if you learn to adapt, listen to your body, and become your own best advocate.” 

2. How has multiple sclerosis impacted your life?

“This disease has impacted my life in countless ways. Some of them are much more positive than others. My fatigue varies daily, but I’ve learned to adjust and listen to my body as much as I can. Thankfully, I was already self-employed before my diagnosis, so I have been able to adjust my schedule more than I would if I was at a traditional 9-5. I shower much less than I used to (thank you, dry shampoo and body wipes). I meditate now because stress, anxiety, and anger not only can lead to more MS flare-ups but they quickly deplete my precious energy. I do my best to be mindful and calm throughout the day (it’s a process, I’m workin’ on it). 

Sometimes my cognitive function is frustrating (cog fog, as they call it), and tasks that I used to find simple are now hard, or I forget common words. Mostly, I’ve learned to laugh it off. 

 My feet now have uncontrollable, painful spasms because of MS-induced dystonia, which makes walking more difficult. I now spend more time than I’ve ever tracked each week stretching, doing self-massage, and researching medical and holistic therapies. I can’t go to as many social activities as I used to, and driving is often difficult.

More than anything else, MS has caused me to become a persistent advocate for myself and for others because while I may not be an expert on multiple sclerosis, I AM an expert in my own body and health. MS has taught me to actually listen to my own body (even if it’s sometimes confusing) and to speak up for myself, whether it’s at a doctor’s appointment or when a stranger suggests a new ‘cure’ online. It’s also taught me that it’s okay to ask for and accept help (okay, I’m still working on this too). 

I’ve always been outspoken, but because of MS, I’ve found that sharing my story online and in person CAN make a difference, which is empowering. Having MS isn’t a fun club to belong to, but the community I’ve found and the people that I’ve met because of it have been absolutely amazing.” 

3. What advice do you have for people who are new to asking for help?

“Asking for help has never been easy for me, and I can’t say that it’s easy now, but it DOES get easier with time and practice. If you’re new to asking for help, try to put yourself in another person’s shoes. If someone you cared about needed your help and you were able to assist them, whether it meant walking their dog or listening to their frustrations, would you? Of course, you would! I always try to remember that even if I ask for help and it doesn’t turn out well, everyone is doing the best that they can. 

It is scary to be vulnerable, to ask for help, or to be authentic about our struggles, but I share my story because I want people to know that they aren’t alone. When I keep that goal in mind, opening up, asking for help, and even advocating for a law ensuring MS patients have access to their meds becomes a less daunting idea. 

Want more of Jenna’s thoughts on life with illness? Check out her website thejennagreen.com or @thejennagreen on Instagram and Twitter.

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