What It’s Really Like to Have Medical Students Shadow Your Life with MS

Yesterday, Pat and Milan came over for their monthly check-in. They’re med students in a special program that pairs future doctors with MS patients so they can actually see what it’s like to live with this disease—not just read about it in a textbook. My doctor, who runs the Neuroscience Institute at Hackensack University Medical Center, also teaches at Seton Hall, and through this program, these students get to spend real time with patients like me.

Basically, they’re here to help with whatever I need. The problem? When they first asked me what I needed, I had no clue. So, I kept it simple: “Can you find out the allowable income limits for disability?” That was it. That was my first ask.

At the time, I wasn’t even thinking about building out a store. Chronic Radiance was just the next step after Chronically Empowered Mom—a hub for my blog and a place to share my journey. But now? I’m in a whole different phase. I’ve already created books, journals, and coloring books. Now, I’m shifting gears—building out my merchandise line. Mugs, apparel, products that spread inspiration beyond just words on a page. And that means my website isn’t just a blog anymore—it’s becoming a fully updated store, a place where my brand actually lives.

So, yesterday, when Pat and Milan came over, we got into it. They asked about my medication, how I’m feeling, and if I need anything. And then we started talking about my website—how I’m rebuilding it, adding an actual storefront, and using AI tools like ChatGPT to streamline everything. I was explaining how I organize my work into folders instead of just searching through old conversations, and their minds were blown.

Here’s the thing—these check-ins remind me that despite being in a wheelchair, I’m doing okay. I know people who have it way harder than I do. I have insurance that covers my meds, and even if it didn’t, the drug companies have co-pay assistance programs. I don’t take that for granted.

At the end of the day, I feel like I’m here to educate them more than they are here to help me. MS looks different for everyone, and I want them to see that. Not all MS patients fit the same mold. Some are in worse shape. Some are in better shape. I’m somewhere in between.

Pat and Milan are great guys. They take time out of their packed schedules to check in, ask questions, and learn. And who knows? Maybe one day, they’ll be the kind of doctors who actually get it—because they didn’t just read about MS in a textbook. They saw it, up close.

Oh, and we took a selfie. Milan’s the one with dark hair, and Pat’s standing in the back.

If you had med students shadow your life, what would you want them to understand? Drop it in the comments—I’m curious.