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Patient InsiderHi, I’mSarahI’m not my MS.I live with MS.

Sarah leans on a cane

I brushed off my symptoms

In 2012, I had 2 toddlers under the age of 3. My husband worked weird hours and I was working full-time. I thought I was just tired.

One morning, I went to stand up as I got out of bed and faceplanted on the floor. I went to the ER and was diagnosed with relapsing-remitting MS (RRMS) that same day.

Six years later, in 2018, I kept telling family and friends that my body felt different. I learned that year that my MS had progressed to my spine. Then, in 2021, my neurologist diagnosed me with secondary progressive multiple sclerosis (SPMS).

My diagnosis brought validation and relief.

My family and I all “live with” MS

When I was diagnosed with SPMS, and my neurologist told me I’d probably been at this stage for a long time, I felt relieved. Sometimes, I felt like people thought I was faking it or overexaggerating. Now I had definitive proof.

By then, I was already adapting my daily life to my progressive symptoms, like my cognitive issues. I set alarms on my phone for everything. To avoid forgetting whether I'd washed my hair, I started moving the shampoo bottle to the other side of the shower after using it. My morning fatigue is now so strong that I need my husband or kids to wake me up to take them to school. We all do little things like that to help each other out.

My family and I made my MS into a character in our house. When my kids were young and got upset that we couldn’t do certain things, I gave them permission to be mad at MS. “She ruined our day,” I’d say. “I’m sorry that it’s not fair. It wasn’t me – my body just couldn’t do this.” My kids may not have MS in their bodies, but they do live with it and the effects of it. It was helpful for them to be able to be mad in a safe space, and helpful for me to not take it personally and have “mom guilt.” We now say that we all live with MS in our house.

My SPMS diagnosis also prompted me to change my mindset. I started trying not to shame myself. I thought, “If you wouldn’t say this to someone else, don’t say it to yourself.”

Reframing my thinking helps me manage my SPMS.

Finding my voice

I don’t always feel like the most articulate person. But now I go to Washington, D.C. and meet with Congress members about how laws around medical treatment can be changed and why. Doing that has made me feel like I have a voice that is not just as my kids’ mom or my husband’s wife. I’ve developed my identity a lot more. Advocacy makes me feel like I have a bit of control and can push back against my MS.

Now that my condition is progressing, I’ve spent a lot of time reflecting on what it means for my family and me. When you get diagnosed, you can either crumple up, or you can fight back and learn to coexist with it. You can be angry about it, or you can try to find humor in situations, when you can.

I try to laugh about the stupid things that have happened and spend time with my kids. I’m very aware that life is short, so I’m big on making memories. I really just want to make the most of my days with the time and the energy that I have.

sarah

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Living with MS can be hard, but there are ways to cope.

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