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You have the power, use your MS voice

By Dan Digmann

The fact you are reading this indicates to me you potentially are interested in taking actions to improve your life with multiple sclerosis. 

Don’t worry. This essay isn’t a sales pitch.

Consider it more like a reality check that was written specifically to help you take control over some of the crap MS keeps dishing in your direction. 

Such control starts with being your own best advocate. That’s right: Advocacy.

But wait, wait, wait, wait, wait! Before you leave because I threw out the “A” word, think about this scene from the 1993 movie Tombstone. It’s the scene where Wyatt Earp (played by Kurt Russell) smacks around an abusive card dealer (played by Billy Bob Thornton) and asks him a pointed question:

“You gonna do somethin’ or just stand there and bleed?”

I often think about how much MS has smacked me around for more than 24 years and, with every challenge it smacks me with, I essentially hear it asking me the same question.

While Billy Bob’s character ran away, I stick around and do something about it. Every. Single. Time.

The reality is nobody knows your situations, circumstances, or needs better than you do. That’s why it’s so important for you to be your own best advocate. 

Remember that for as much as MS has taken from you and affected your life, you still have the power of your voice to make a difference for yourself. 

Advocacy sounds a lot more interesting and empowering now, huh?

First things first: Don’t overthink this whole advocacy thing. It’s really about you using your story and experiences to make things better for yourself and other people. 

After all, aren’t we all storytellers? Whether it was explaining to our parents what unforeseen turn of events led to us missing their mandated midnight curfew or telling our BFF about a recent watermelon-related mishap at the grocery store, we all tell stories. 

When it comes to MS, don’t we all have a ton to say about our experiences? From our initial diagnosis to MS symptoms, MRIs, disease-modifying therapies, self-care strategies, family dynamics, employment issues, using assistive devices and, you see where I’m going with this?

We each have a lot to say about MS. 

The key is taking our experiences and sharing them with the people who can help make a difference. It’s totally understandable if you’re nervous or uneasy about venturing into this level of change-making. 

But fear not. You are the expert when it comes to your story, and people need and want to hear what you have to say. 

Are you going to change the world in one day? Spoiler alert: probably not. However, the momentum for change can either start or continue with you. What’s important is that rather than ignoring or complaining about an issue, you do something about it. 

To give you some ideas for how you can use your stories to affect others, here are three personal experiences to demonstrate what I’m talking about.   

1. Tell your doctors what they don’t know 

That maybe sounds a bit aggressive, but it’s at the core of what we need to do as MS patients. This disease treats each of us so differently, our primary care physician, neurologist or any other health provider can’t possibly know what’s going on unless you tell them. Explain what you’re experiencing. Spell out what you need.

I had taken the same DMT for more than 20 years and was having good results with it. That is, until my body was running out of sites to give myself another subcutaneous injection. I shared with my neurologist the story of how there was so much scar tissue built up in the recommended rotation sites that the shot would no longer go into my skin (more than two decades of injections has its consequences).

She understood and provided her recommendations for DMTs to consider. After discussing pros and cons of several options, we agreed on my next course of action, and I’ve been on the same twice-annual infusion the past two years.

Unless I shared my experiences, she never would have known I was having any issues. It all started with me sharing my story.  

2. If there’s a problem, we’ll help solve it

Bonus points to you if you caught my reference to the Vanilla Ice lyric in the preceding sentence. And if it got Ice Ice Baby stuck in your head for the rest of the day, you’re welcome.

My wife, Jennifer, and I are upfront about our life as MS and disability advocates. She has secondary progressive MS and needs to use a power wheelchair because she no longer can walk or stand. And one of our most meaningful efforts as advocates actually happened at our church.

Immanuel Lutheran Church in Mount Pleasant, Mich., has two main entrances: the church building itself and the fellowship hall. While you can directly enter the church, there are steps (and a wheelchair ramp) to enter the fellowship hall. 

This is where we spotted the issue when we went to church for a committee meeting one Monday evening.

Yes, the fellowship hall has a ramp, but the downside was for all the handicapped parking that was near said ramp, there was no curb cut to get from the parking lot up to the sidewalk to access the ramp. Instead, Jennifer (and anyone else using a wheelchair) had to drive all the way down the parking lot to get on the sidewalk and then drive all to way back down the sidewalk to access the ramp. 

The night of our meeting we explained our concerns with our pastor. She apologized for this unfortunate oversight and appreciated us bringing it to her attention. 

A curb cut was installed near the ramp within three days.

The case could be made to call the curb cut an act of divine intervention. But we prefer to consider it the result of two people sharing their experiences with the person who can help to improve their lives and the lives of others who use wheelchairs or walkers. Parents with strollers. Movers with dollies.

3. Elected officials are members of your community who work for you   

Few things are more empowering than when you meet and make a connection with your elected officials or members of their respected offices. And this can include everyone from your city council member to your county commissioner, State Representative or U.S. Senator.

These are the lawmakers who need to hear from you so they know what you – as their constituent – need from them. Jennifer and I are active as MS activists and regularly send letters, make calls, and meet with our state and U.S. legislators to share our experiences and how current legislation will affect us and others in the MS community.

We recently had the opportunity to go to Washington, D.C., as part of the Public Policy Conference. Through this event, we learned about two issues to discuss in meetings with our members of the U.S. Congress and U.S. Senate. These issues were:
  • Cosponsoring the Air Carrier Access Amendments Act and support its inclusion in the 2023 FAA Reauthorization – This legislation will help to address barriers to air travel accessibility for people living with disabilities.
  • Support $22 million for the MS Research Program and $7.5 million for the VA MS Centers of Excellence in FY24 – This request will support federal funding used specifically for MS research.

We took our background on these two issues to our elected officials and members of their staffs and shared our stories of how such legislation will benefit us and the nearly 1 million other Americans living with MS. It’s important for them to hear from us all because they need to know how we each are affected by the decisions they make for us as their constituents.

Yes, advocacy can sound intimidating on the surface, but when you look at it on a deeper level, it’s all about sharing your stories and experiences with the people who have the ability to help improve your situation and circumstances.

Whatever you call it, it’s the empowering action you have as a person who has MS. For as much as this disease has the power to take things away from us, our voice is one thing many of us can continue using to stick around and do something about it.
Every. Single. Time.