By Monica Proctor Wilson
Hi warrior friends,
After living with MS for 18 years, one of the biggest lessons I’ve learned is the importance of building a safety net. I always encourage MS friends to: 1) Research their choice of DMT’s, 2) Find a Neurologist that specializes in MS, 3) Keep a Mental Health provider, and 4) Build a Safety Net.
Step 1- Understanding My Safety Net:
Safety net can mean different things to different people. Before I could start building my safety net, I went to the definition:
Safety net (noun): something that provides security against misfortune or difficulty.
At first, I thought I already had one. I had family and friends that loved me. After the first year, the “Let me know if you need anything” texts faded. Not because they didn’t care, but because MS is complicated—emotionally, physically, and invisibly. I realized not everyone could truly understand what I was going through. 🧡 This isn’t about blame. It’s about recognizing who I needed in my safety net.
Step 2- Creating a Venn Diagram:
I went back to the definition and included understanding, consistency, support that doesn’t fade. I grabbed a notebook and created a Venn diagram with three categories based on these questions:
- Reliable people: Who checks in on me without being asked?
- Understanding people: Who listens without trying to fix me?
- MS-aware people: Who understands (or is willing to learn about) MS?
The center of that diagram surprised me.
Step 3– Building mM Safety Network:
I turned the page on my notebook and started another list of the MS related things I needed in my safety net. My list included:
- People who understand MS without a long explanation
- Tools and strategies for good and bad days
- Permission to be vulnerable
- Ways to stay connected to others, even when my body isolates me
One of the best things I ever did for my MS was to connect with others living with MS. After numerous days of crying in the shower because my life was changing, I started reading MS stories online, next I attended MS educational dinners, then I started attending self-help groups. I sat in the back listening, then I started sharing. Eureka!!! I found my SAFETY NETWORK!!! MS Warriors who just got it. No need for long explanations or awkwardness. Just instant understanding. If you haven’t found your safety network, keep looking. It’s out there. A safety network will make all the difference in this journey called life with MS. 15 years ago, I created a safety network in my head, called SPEAK MS, which now meets weekly on zoom with MS Warriors. My Warrior family provides everything on my list and much more. If you haven’t found your safety net, I encourage you to take a few days and decide what you need. It’s out there. And it will make all the difference in your life with MS. Building your safety network takes time, but you are so worthy of it.
Until next time —🧡
Monica Proctor Wilson
Your Sister in MS, figuring it out right beside you
I’m Monica Proctor Wilson, and I’ve been living with multiple sclerosis for 19 years. I facilitate a self-help group called SPEAK MS, where we Share Personal Experience and Knowledge of MS, connect, and keep each other uplifted. I’m also an MS advocate and serve on the Government Relations Advisory Council, working to make sure the voices of people with MS are heard at every level. In 2023, I was honored to receive the National MS Society’s Inspiration Award. My passion is helping others find strength, purpose, and community while navigating life with MS.
