If You have MS, You Have a Story to Change Lives

Do you see yourself as an MS advocate? If not, look again. You’ll be surprised to see that you have the one fundamental element it takes to make an impact: your MS story.

Becoming an advocate

I honestly didn’t see myself as an advocate either until I saw a cute man on September 28, 2002. Unbeknownst to me, the first page of my MS advocacy story was written on that day. This cute man also was living with multiple sclerosis, just like I had been since my diagnosis in 1997. There was no denying that he would be in my future; that is, if my future went the way I hoped.

That September afternoon, we both were attending a National Multiple Sclerosis Society program focused on reclaiming our hopes and dreams that we put on hold after being diagnosed with MS. It was a deeply moving, emotional and cathartic program where I shared my story and connected with that cute man. I have been blessed to have maintained a connection with Dan – a.k.a. the cute man who became my husband – ever since.

I hate to break it to you, but yes, it was that easy. We just clicked. Maybe because we were older than most couples, or maybe it was because we knew what we wanted and didn’t have time for any foolishness. After all, nothing like a chronic illness diagnosis to get your priorities and future straight. But our relationship was right from the start.

Worrying about the future due to MS

Right, except for that aforementioned chronic illness and the wheelchair I had just started to rely on for my mobility. But Dan and I were smitten, so MS and my wheelchair were details we weren’t too concerned with. That is, until things started to get serious, and we wanted to have a future like any other newlywed couple.

Again, about that chronic illness we both were living with… my MS had progressed to the point where I could no longer complete the most basic activities of daily living by myself, and Dan was living with MS and also was maintaining a full-time office job. Exactly how were we going to make our future happen?

Speaking up for our rights

Fortunately, we learned about, and I enrolled in, the MI-Choice Medicaid Waiver Program. This income- and disability-based program provides in-home care to help me with activities of daily living during the day so that Dan can continue working.

The care I receive is so important to us. This program has allowed me to maintain my independence and live with Dan in our own home. Our advocacy started because we were passionate about continued funding to support the Michigan MI-Choice Medicaid Waiver program.

Again, it was that easy. Dan and I drove to Michigan’s Capitol in Lansing and shared our story about how this state program helped me to stay in our home and contribute to the local community. We wanted our elected officials to see their work in action. We made appointments with our state senators and representatives. The legislators and their staff listened, asked questions, and were engaged.

Reclaiming some power

So much about MS can make me feel powerless, but advocacy has helped me reclaim some power. Just like that, Dan and I were empowered, and we were advocating.

We saw how our stories made an impact that day. This is why we continue to share the realities of our life as a married couple who are living with multiple sclerosis – me, a woman living with secondary-progressive MS, and my husband, Dan, who is living with relapsing-remitting MS.

There are so many stories we have to share and so many lives we can help to change. We are living a life of advocacy for ourselves and others, whether it’s requesting a curb cut at our church to make its sidewalk more accessible or writing an op-ed piece about improving airline accessibility.

Getting started

And Dan and I are just two people who are living with MS. Think of how much you can do to improve your situation and the situations for other people by sharing your story. It’s easy to get involved. One potential place to start is through the National MS Society Advocacy website, or sharing your experience on MultipleSclerosis.net.

All you need is your MS story.