What I’ve Learned Since Being Diagnosed With MS in 2019

When I was diagnosed with Multiple Sclerosis back in 2019, I felt a strange mix of relief and fear. Relief, because I finally had a name for what was happening to my body. Fear, because I didn’t know much about MS—and what I did know wasn’t exactly encouraging. At the time, I thought my life was over.

Looking back now, almost six years later, I can say with confidence that it wasn’t the end of my life. It was the beginning of a very different one. Here’s what I’ve learned along the way.

1. Treating the Symptoms Is Important, but So Is Listening to Your Body

When I was first diagnosed, I was prescribed Gabapentin for nerve pain. It worked, sort of. The pain was better, but everything else got worse. I was dizzy all the time, my vision (which was already bad) seemed even blurrier, I gained weight, and I just felt off—tired, sluggish, and disconnected.

When I moved to Texas, I found a new neurologist who encouraged me to taper off of it. Best decision ever. I stopped taking Gabapentin in 2022, and I honestly feel 1,000% better. The funny thing? The pain I was trying to treat is now almost nonexistent. I don’t even need medication for it anymore.

The lesson: medications can help, but you have to pay attention to how they make you feel, not just whether they treat the symptom on paper.

2. Mobility Aids Aren’t a Sign of Weakness

This one was hard for me. I’m still relatively young (I just turned 40), and I used to run all the time—5Ks, half-marathons, even a full marathon once upon a time. The idea of using a cane or a scooter was embarrassing at first. I thought people would judge me.

But once I really needed them, that embarrassment disappeared fast. If I want to be independent, I need to use what helps me stay that way. Who gives a flying f*ck what anyone else thinks?

These days, I can only make it maybe a quarter mile—on a good day—without assistance. Even on a good day, that's not pretty. My mobility aids aren’t limitations; they’re tools that give me freedom.

3. Fatigue Is a Whole Different Beast

Everyone knows the feeling of a food coma after a big meal. For me, that’s just… normal life. Every day around 2 p.m., it hits. That wave of exhaustion that’s hard to explain unless you’ve felt it yourself.

Pair that with insomnia and you’ve got the ultimate double-win. My situation could definitely be worse, but it’s still frustrating. Fatigue is one of those invisible MS symptoms that people don’t see, but it shapes so much of how I plan my day.

4. Every Person With MS Is Different

If there’s one universal truth about MS, it’s that no two people experience it the same way. Some people struggle with pain, others with balance or vision or fatigue—or all of the above.

But the one thing that connects us is understanding. When I meet someone else with MS, there’s an instant connection. We get it. We don’t need to explain what it feels like to lose balance or why we cancel plans at the last minute. People without MS can sympathize, but they’ll never truly understand—and that’s okay.

I feel like I've been pretty lucky. I can still function on my own. There are many that can not. Even though I've got a slew of seemingly unrelated symptoms that can sometimes cause some really big problems... It could be worse.

5. Life Isn’t Over—It’s Just Different

It’s not all doom and gloom. I still do the things I love—like going to Disney World—just differently. I roll through the parks on my Pride Go-Go Sport scooter, and honestly, I get to experience Disney from a whole new perspective. When I do Disney with my Neural Sleeve and the scooter, I feel unstoppable.

Bonus perk? I get to sit in those long lines instead of standing. (You’re jealous, admit it.)

Disney’s accommodations for people with disabilities are top-notch. They make it easy to enjoy the parks, no matter your situation. I’ve learned to embrace that, and it’s made travel fun again. Even flying with a scooter is easy. So buy your own, don't rent, it's worth it.

6. Take It One Day at a Time

If MS has taught me anything, it’s that life can change in an instant. You can feel great one day and struggle the next. Some days you’ll apologize for things you can’t control. Other days, you’ll feel unstoppable.

The key is to take it day by day. Appreciate the good ones, and give yourself grace on the bad ones.

Living with Multiple Sclerosis isn’t easy, but it’s also not the end. It’s a reminder to slow down, adapt, and keep going—because this journey is still worth every moment.

7. Don’t Fall for the Gimmicks

There’s a lot of noise out there when it comes to MS “cures.” I read an article not too long ago from some random site claiming someone cured their MS by eating nothing but leafy greens and vegetables. Spoiler: there is no cure for Multiple Sclerosis.

Don’t fall for the BS. There’s a ton of misinformation online, and it’s easy to get pulled into false hope. Do your research, listen to your doctors, and make decisions based on facts—not fads.