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At the core, all of us living with multiple sclerosis have a similar story to share. 

Yes, MS affects everyone differently. But we each carry with us that specific moment we first heard the words we were definitively diagnosed with a chronic progressive disease of the central nervous system.

The details of the events leading up to our respective diagnosis day, the conversation in the doctor’s office, our immediate reaction, and how we’ve responded each day since then vary from person to person. 

But we all were told, “You have MS,” in some way, shape or form.

Take some time to reflect on that moment and the thoughts that dominated your mind and the feelings that consumed your soul. Maybe you were scared. Or perhaps you were confused. Angry. In denial. Overwhelmed. Anxious. Panicked. Relieved.

Through it all, were you also wishing you could find another person living with MS who you could talk to, get answers to your questions, comfort from your fears, reassurance that everything eventually would be okay, or inspiration to follow on your unplanned MS path?

Quarter of a century

I’ve contemplated all of this in recent months as I realized Feb. 14, 2025, marked 25 years since my now-retired neurologist broke the news the numbness, fatigue, and muscle weakness that set off a series of troubleshooting tests and trips to the doctor was, indeed, because I have MS.

Think about it. Twenty-five years equates to a quarter of a century. In marriage years, it’s my silver anniversary. In legislative years, my MS is now old enough to serve as a U.S. Representative. In technology years, my MS predated and outlived Apple’s iPod.

What makes me feel old is the reality that when I was diagnosed in 2000, if I were to meet a person then who had lived with MS for as long as I have had it now, that person would have been diagnosed in 1975 — the same year “Love Will Keep Us Together” by Captain and Tennille topped the charts, “The Godfather Part II” won best picture, and the Pittsburgh Steelers won its first-ever Super Bowl.

Yeah, I feel somewhat like a modern-day dinosaur of sorts with 25 years of MS under my proverbial belt.

Being that person

But for as much as it helped me accept and come to terms with my MS by connecting with other people with the disease who were around my age and at the same stages of their career, family life, health, and abilities, I also needed to see the people with longevity who moved beyond and rose above their MS.

Those who worked all the way to retirement, stayed married for decades following their diagnosis, committed to managing their MS as best as they could using the most effective disease-modifying therapies and resources, and — most of all — continued to stay hopeful and optimistic through the good and not-so-good days with this disease.

It’s in reflecting on my 25 years with this disease that I realized this is the kind of person I always have strived to be for others who are dealing with this unpredictable monster we collectively call MS. 

It starts with me being that person I was looking for when my neurologist tacked my MRI scans to the lighted screen on Valentine’s Day 2000, pointed at the Swiss cheese-like white spots that peppered my brain, and said, “You have MS.”

No one is alone

I’ve done what I can to stay mentally strong in spite of the effect MS has had on my life, everything from a failed first marriage to losing my ability to run. Whatever it’s thrown at me, I have found a way to get back up and continue to do my best. Not a best compared to other people, but my personal best based on the realities I am facing with my MS.

How about you? Are you the person you were looking for when you were first diagnosed with MS? 

I get it. The disease can have a devastating effect on us all. So, I don’t imagine any of us were looking to become disabled or have things such as cognitive challenges or bladder issues. But, have you found a way to rise above these kinds of effects to give your then-newly diagnosed self a sense of pride in the strength you’ve shown despite your MS?

The key is whether you were diagnosed 25 days, 25 months or more than 25 years ago, none of us are alone in this disease.

May we all continue to connect and build our respective communities so we can be the strong, comforting, reassuring, and inspirational people we were looking for following our MS diagnosis.