Building A Safety Net

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.

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You Are Not Alone: How to Build a Support System with MS

Living with a chronic illness like multiple sclerosis (MS) can feel isolating at times. While we can be our own support system through self-love and self-care, not everyone has strong family ties that bring support and comfort. Many of us may not have a built-in support system, and that’s okay. The good news is that building one is entirely possible. Know that you don’t have to do this alone.

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Establishing Safety Nets

By Stacie Prada

Back-up plans and safety nets ease my worries. If I know I have options and support, my stresses for the future can be put on the back burner.

Which safety nets do I have control over? Which are vulnerable and might not be reliable? How strong are my safety nets, and where are the gaps?

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Acknowledging Your Safety Net

By Dr Eva Jackson

Let us take a moment and go back into time. Remember your life before multiple sclerosis. Now stop and take a big breath as you let your memories unfold. You may visualize the days of going to a theme park and riding all the rides, or running on a sandy beach, just having fun. The days before watching your steps to ensure that there were not any barriers that would create a fall hazard or looking at the handicap parking spaces at your local grocery store to ensure that you did not have far to walk.

Now smile, because if you can visualize this, just know that you are not alone. Most of us are very independent people. People who never relied on others when making plans to go places. Independent individuals who very seldom had to go to the doctor regularly or spent days researching healthcare plans because this work was often done by your jobs.

As you think about those days, I will tell you a little secret. I have not been to a Christmas parade in over 5 years. During my last parade, I experienced several falls and sustained a shoulder fracture the next year. The risk is not worth the fulfillment of watching a parade in person.

Now MS has created a need in you to find safety nets in your home, communities, and healthcare. A safety net that you may have never thought you would need. A safety net could be financial, healthcare, family, or community support.

Let’s look at different safety nets and how they may vary for you.

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Creating Your Safety Net: Living with MS

Life with MS can be full of ups and downs. Some days you feel strong and independent – others, you may need a little extra support. That’s completely normal. No one is meant to carry everything alone – MS or not.

Having a reliable support system – a personal safety net – can make daily challenges more manageable and help you feel more grounded, emotionally and physically. Whether you’re newly diagnosed or years into your MS journey, it’s never too late to build or strengthen that circle of support.

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What Does a Safety Net Look Like?

By Samuel Fitch

When you think of a safety net, what comes to mind? Is it a circus act—a high-flying trapeze artist soaring through the air or someone being launched from a cannon, hoping to land softly?

The truth is, safety nets come in many forms. At their core, they are tools that provide security, comfort, and confidence.

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Enhance Your Safety Net with My MSAA Community

Living with multiple sclerosis can bring about a number of uncertainties – from navigating symptom and treatment options to dealing with emotional and lifestyle changes. While every journey with MS is unique, one thing is universal: no one should have to face MS alone. This is why the Multiple Sclerosis Association of America (MSAA) created My MSAA Community.

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Self-Advocacy: Challenges, Tips, Mentors and Allies

By Stacie Prada

Self-advocacy is hard work. We’re likely advocating for ourselves in tiny ways all the time, and we don’t notice when there’s little to no resistance.  Frustration grows when we meet opposition and live with pain and unmet needs.

Barriers to self-advocating: Sometimes, I don’t know what I need, I’m unsure of what resources exist that could help, or I’m not being heard by those who could help me. Even if they want to help, they might not know how.

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When It Comes Time to Pay the MS Tax

We all know the feeling. That surge of energy, the desire to participate, to feel “normal” for a while. Whether it’s attending a family gathering, tackling a long-awaited household project, or simply enjoying a few hours out with friends, those with multiple sclerosis (MS) often seize these moments with both hands. 

But as many in our community understand all too well, this activity often comes with a significant price: the dreaded “MS tax.” 

Here is what our community members had to say about how they deal with physical and mental exhaustion after overexerting themselves.

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Proud Memories

By Bonnie Lynn Ellison

May is a good time to reflect on myself, and what my younger self would be proud of. When I was young, I thought life was a rodeo! I competed in the National Little Britches Rodeo from 8 to 18 years old, and was proud of my ribbons, buckles, and trophies! I learned, if you got thrown off, you got back on the horse!

When I was young, I also played my guitar and sang in talent shows, from 7th grade through high school. In college, I performed with the FAB Company. We toured nationally in the early 1970’s, recorded four albums, and were contracted with the major international talent agency, William Morris. I’m proud that we wrote our own original music, songs, and comedy. We did concerts! I thought I was Taylor Swift!

I fell in love, got married, and two years later, I was diagnosed with multiple sclerosis. I was 25. It affected me like a stroke, on the right side of my body. I had never heard of this disease, so it was like an old rodeo injury to me. It took about three years to recover enough to write, sing, and perform again. And there were no assurances that it wouldn’t return. I had always been athletic and healthy. It was shocking for me, and a struggle.

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