Learning to Live in Harmony With Multiple Sclerosis
This story was written by Courtney Platt, a dancer, choreographer and actor who lives with relapsing multiple sclerosis (RMS).
Living with a chronic disease like multiple sclerosis (MS) can be challenging — and being a mother, daughter, wife, sister, and friend with MS can be… exhausting. For me, learning how to manage my multiple sclerosis has helped me find the motivation to live the best I can, today. When I was diagnosed at age 23, I wish someone had handed me a manual — How to Live With MS… While Keeping Your Sanity. I joke about it now but being diagnosed with a chronic illness can hit you like a train — and it can take time to learn what it takes to pick yourself back up.
Now that I’ve been living (and thriving) with MS since 2012, I want to be a resource for all those who could use one. After partnering with BMS to co-create MS in Harmony to highlight the many potential benefits of music therapy, I wanted to create the “manual” that I wish I had. Here are my top five tips for anyone living with a chronic disease, specifically multiple sclerosis:
1. Don’t be afraid to say NO.
It’s an important skill to have and one that I’ve had to work on. Before my diagnosis, I was a “yes” person. I joke that I’ve now become a “no” person — but it’s one of the best things I’ve ever done for myself.
Despite being a working woman, wife, and mother of a 3-year-old boy, there are certain things I must put off due to fatigue or flare-ups. Planning your activities to allow for that all-important down time is sometimes exactly what your body needs to recoup and regain the energy necessary to be there for your loved ones.
2. Relish the down time.
When I need to curl up on the couch or give myself a day off, positive affirmations help me remember that I’m good enough and doing what I need to do to be able to show up for my family and friends. Even a saying as simple as: You can’t take care of anyone else unless you first take care of yourself. Taking care of yourself doesn’t mean ‘me first.’ It means ‘me too.’
I often feel that I am carrying the weight of the world on my shoulders. It’s important to remember that if you take the time you need to recharge, the world will not fall apart without you.
3. Give music therapy a try.
Music has played such an important role in my life, but I never knew it could play a role in helping to manage my multiple sclerosis. When I first heard about music therapy I thought — how did I not know about this sooner!?
I’ve had the incredible opportunity to work with Bristol Myers Squibb and the American Music Therapy Association to create an online music therapy resource called MS in Harmony. MS patients and their caregivers can go to MSinHarmony.com to access a variety of music therapy inspired videos and educational materials aimed at playing a role in helping you achieve mind-body harmony — everything from using music for memory to listening to certain songs to evoke emotions, and more!
For me, using music therapy as part of my broader treatment plan has helped me learn how to better manage the mental symptoms that come with my MS such as mood swings, forgetfulness, and brain fog.
4. Find your cheerleaders.
This one is three pronged: 1) find friends and family that can support you best, 2) find a healthcare team that you know and trust, and 3) connect with others in the multiple sclerosis community.
It is incredibly important to have open dialogue with the people around you — friends, family, doctors, etc. Having MS can feel very lonely at times so it’s important to remember you’re not alone and to surround yourself with those who bring love and positivity to your life. I also highly recommend connecting with others in the multiple sclerosis community through social media and advocacy groups. As much as your friends and family will try to understand, someone who has MS will ACTUALLY understand — and that’s a comforting feeling.
5. Don’t stop living your life.
When I shifted my mindset (and started practicing all of the above), I was able to truly focus on the positive things in my life. Everyone is fighting their own battles, and this is mine — and I’m a warrior!
Focus on doing the things you love, spending quality time with friends and family, and living life to the fullest.