Empowering people affected by MS to live their best lives

From the Community

September 3, 2025

Rory Kandel

Left: A woman kits in a kitchen holding a cane. Right: A tattoo that reads "and so it is." — A progressive MS diagnosis changed Rory Kandel’s life in many ways.

progressive MS, it can be hard to see and hear from people with MS who are “fine.” Because I’m not fine.I am only 18 months post-diagnosis and, in those 18 months, I’ve gone from being completely mobile to dealing with extreme pain and using a cane. I’ve had very swift progression. I just can’t imagine what it would feel like to have MS and be able to run a marathon or climb a mountain.Internally, it’s very hard not to point the finger back at yourself and say, “What am I doing? Why are they okay?” Because even if we want to be that person, some of us just can’t. Like, I want to walk normally. My mind wants that so badly. But my body? There’s a disconnect there, and I just can’t get it to do what I want. I am a very willful person, but that just isn’t enough." c-nmssatomrichtext_nmssatomrichtext-host="">

Recently, I opened my social media feed and was greeted by the story of someone who, like me, has multiple sclerosis. But, unlike me, that person was running a marathon.As someone with progressive MS, it can be hard to see and hear from people with MS who are “fine.” Because I’m not fine.I am only 18 months post-diagnosis and, in those 18 months, I’ve gone from being completely mobile to dealing with extreme pain and using a cane. I’ve had very swift progression. I just can’t imagine what it would feel like to have MS and be able to run a marathon or climb a mountain.Internally, it’s very hard not to point the finger back at yourself and say, “What am I doing? Why are they okay?” Because even if we want to be that person, some of us just can’t. Like, I want to walk normally. My mind wants that so badly. But my body? There’s a disconnect there, and I just can’t get it to do what I want. I am a very willful person, but that just isn’t enough.

There’s No “Miracle Cure”

To be honest, I also struggle with the competitive feeling I find in online MS forums. People say, “I’m on this diet” or “I’m taking these supplements and I’m fine.” People write, “I don’t eat sugar,” “I don’t eat fat,” “I don’t drink wine, and that fixed everything.”But I have already had to give up my daily walks, which meant everything to me and my mental health, because of my progression. If I also have to give up going out to eat or having a glass of wine? No, thank you. I still want to live a joyful life, and I have talked to enough doctors to know that none of those things are going to bring my mobility back. Will they make my back hurt a little less? Maybe. But I am 46 years old and still get so much enjoyment out of those things.I am a firm believer that today is all we have. I didn’t foresee MS coming, and I can’t foresee what tomorrow is going to bring. So, I want to enjoy today and get the most out of it. But it’s hard not to get into the habit of looking at what everybody is doing that they claim was the miracle for them.

The Pressure To Be Positive

newly diagnosed. And I’m just not there yet." c-nmssatomrichtext_nmssatomrichtext-host="">

It’s also hard to talk about feeling this way, because there is a sort of pressure to always look at the bright side. Whenever I write or talk about my MS, I always try to have a silver lining. I don't want to turn people off and I don't want them to be like, “Ugh, she's so miserable.” I say that MS has changed my perspective, made me live more in the moment, and given me empathy for people I walk by on the street. All of that is true, and I do believe MS has made me a better person. But would I give all of that up to be back to my “normal”? Yes, 100%. If I were going to be totally honest, every day is miserable. There’s just no way around that. But nobody wants to hear that.Ultimately, I think there’s a balance. It’s nice to know that MS has gifted me some things. And I imagine for the rest of my life, it will continue to give and take away equally. And that’s just the nature of it.Every single MS story may start the same, but each one has its own million chapters, and this is mine. Every waking minute, my MS is with me. I’m not able to ever feel okay. I haven’t felt okay since the symptoms first came on. I’m happy for the people who found something that works and are out there running marathons. But I also know people who, like me, have tried all the things and have gotten nowhere. And I wish those stories would be told, too.Maybe someday I’ll get to the place where seeing people with MS who are “fine” won’t bother me the same, but I’m still newly diagnosed. And I’m just not there yet.

newly diagnosed. And I’m just not there yet." c-nmssatomrichtext_nmssatomrichtext-host="">

Rory Kandel is a 46-year-old from Napa, California, who was diagnosed with MS in 2023. She owns and runs her own bake-at-home bakery business while battling MS and its desire to take away her mobility.

Articles by Category

Latest Issues

Summer 2025

Spring 2025

Cover of Momentum Magazine, Winter 2024-25 issue

Winter 2024–2025

Fall 2024

I Can’t Run a Marathon — But My Progressive MS Story Still Matters

There’s No “Miracle Cure”

The Pressure To Be Positive

Articles by Category

Featured Articles

Learn More About User Research

6 Ways to Navigate Your Health Insurance with MS

Latest Issues