Invisible, Not Imaginary: How MS Took My Energy but Gave Me a Voice

I've heard it more times than I can count: But you don’t look sick.

That one sentence meant as a compliment by people who don’t get it is a gut punch every time. Multiple Sclerosis (MS) doesn't show up in a neat package with a cane or wheelchair for everyone. It doesn't follow a predictable path. Some days I can bike 75 miles in a fundraising ride for BikeMS or Walk three miles for another fundraising event for WalkMS. Other days, I'm drained just getting out of bed. That's the paradox of invisible illness: it’s relentless, unpredictable, and real as hell, even when no one else can see it.

I was diagnosed in 2016. That day flipped everything. One moment I was just tired. The next, I had a name for something that would never go away. And that's what no one really prepares you for, not just the diagnosis, but the long-term reality. The changes in your body. The people who slowly fall away. The pressure to power through so others don’t feel uncomfortable.

For a while, I stayed quiet and tried to be humble. I showed up to work, tried to stay physically active, and didn't talk much about what was going on behind the scenes. What some saw was my endless tears, but I pushed through symptoms and ignored my limits because that's what we're trained to do, right? Keep it moving. Don't complain. Don’t look weak.

But MS doesn't care about your hustle. It will sit you down whether you like it or not. That's when I realized: silence wasn't strength; it was survival. And survival isn't enough anymore.

Now, I will speak up. Loudly. Publicly. Not because I enjoy reliving every symptom or struggle but because I'm tired of the silence. I'm tired of watching other people with autoimmune diseases suffer alone in that same quiet, disconnected way. This column is my way of changing that.

I've been called inspirational. Let me be clear: I didn't ask for that title. I'm not a superhero. I'm just a guy living with a disease that's trying to wreck my nervous system. I show up because if I don't, this disease "WINS" twice over: first by taking my body, and second by taking my voice.

And here's the thing: MS may have changed the way I move, but it amplified how I speak. I've become an advocate, a cyclist for the BikeMS, and now, a columnist for "The Invisible Voice". That's not just a title; it's a responsibility. I know what it feels like to be misunderstood, dismissed, or told you're exaggerating. This column is for the people who are tired of being ignored. The ones who are too exhausted to keep explaining what they're going through. The ones who've had to fight for every ounce of understanding at work, in healthcare, even in their own families or the ones they lost due to the unknown.

If you're one of them, know this: you're not alone. You’re not "Invisible" to me. This isn't going to be a space for sugarcoating or pity. It's going to be blunt, real, and sometimes uncomfortable. Because autoimmune diseases don't play nice, and neither should we when we're telling the truth.

I didn't choose MS. But I do get to choose what I do with it. And I'm choosing to speak!

I'm reminded of this quote from Helen Keller that helps guide me with "Strength" - "Walking with a friend in the dark is better than walking alone in the light."