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Living With MS

How Sam Salvaggio Learned to Thrive While Living With MS

sam salvaggio-remitting-community-toxic positivity
sam salvaggio-remitting-community-toxic positivity
Sam Salvaggio

Sam Salvaggio’s life was turned upside-down when, in 2020, she was diagnosed with relapsing remitting MS. She’s made a name for herself creating content about her experiences that is free of toxic positivity and informed by her advanced education in nutrition and pharmacology. We talked to her about her experience living with MS and how she’s found strength in creating a community.

When were you first diagnosed with MS? What signs and symptoms were you showing that made you seek a diagnosis? 

I was diagnosed with Relapsing Remitting MS on Dec. 5, 2005, when I was 19 years old. My initial symptoms occurred in November of that year and were very severe.

At the time, I was a sophomore at The Ohio State University studying pharmaceutical sciences. I woke up one fall morning to go to a football game and felt woozy, but figured I was just low on sleep. During the game I could not control my body temperature — it was mid-November in Ohio and I was sweating through my t-shirt and jeans.

Once the game was finished, I realized something was really wrong. I thought the body temperature issues were from a fever coming on, so I went home and took what I thought would be a nap.

I woke up 20 hours later to double vision; ataxia/loss of coordination in my right (dominant) hand and arm to the point where writing or opening a door was impossible; weakness in my legs causing difficulty walking; along with the continued body temperature regulation issues. I couldn’t see or operate my hands or legs very well, so I called a friend to take me to the ER.

I thought I had a stroke. That was what the doctors thought, too, until they did an MRI. The MRI indicated lesions typical for MS, so they were leaning toward that diagnosis. By that time, my parents had made the drive in from Cleveland. Ultimately, we decided I would leave the hospital and follow up with a neurologist closer to home immediately to do further testing and start steroid infusions.

Within a few weeks, I had a spinal tap, evoked potentials test, steroid infusions, and was formally diagnosed with relapsing remitting MS (RRMS). It took about 8 months to return to what would be my new baseline. At the time, the intensity of symptom onset and recovery was overwhelming, but now I am grateful because it led to a faster diagnosis.

In the mid-2000s there were only four options for injections disease modifying therapies, aka DMTs. I started treatment in January 2006, about a month after being diagnosed, and have been on DMTs ever since. Currently, I am on my ninth DMT — my MS is stubborn (like me), but hopefully the ninth time is the charm!

After diagnosis, I spent about 10 years aware that I had MS, and while I was not actively denying or fighting it, I wasn’t fully taking care of my body and mind in a way that worked for me and my MS.

After reaching a low point, I decided enough was enough. I knew I needed to revamp my lifestyle and accept MS, or I would stay stuck. I reflected on what having MS meant to me and worked on radically accepting the diagnosis.

I realized I didn’t have to love havingMS to accept that it’s my reality. I accepted MS; instead of focusing on things outside of my control, which just wasted my precious time and energy, I shifted my focus to things I could control to set myself up for the best future possible.

My goal was to feel better in the present by working with my body and mind instead of against it. I paid attention to what I could do rather than what I couldn’t. Through trial and error, I figured out what helped me. 

I started incorporating more movement into my day, which then turned into shifting my diet to include more nutrient-dense foods and focusing on hydration to help fuel my body. Then, I prioritized getting good quality sleep and minimizing stress as much as possible.

After seeing the positive changes physically and mentally, I felt more empowered and confident. I was living the life I envisioned even with MS. That was a powerful moment because it showed me that throughout life, obstacles will arise, and sometimes they are big and unexpected, but by accepting them and learning how to work with the obstacle, you can adapt and thrive in more ways than you even expect. 

While MS has been a big pain at times, it has taught me many valuable lessons that I could have only learned by living with a chronic illness. Not only do those lessons help me throughout my life in general, they have helped as my MS journey evolves as well.

Everyone with MS differs, but for me, I have relapses almost annually. Back in 2021, I had a relapse, and while I recovered some, I didn’t fully. Plus, my daily MS symptoms were becoming more intense, and I had less wiggle room before symptoms would worsen.

Then, in January 2023, I had another relapse that affected my mobility. That, coupled with the slow progression I had been experiencing in the year(s) prior, meant that my diagnosis changed to active secondary progressive MS.

Adjusting to that has been a process and is reminiscent of the ups and downs I had when I was diagnosed with RRMS back in 2005. But I have leaned on all the things MS has taught me over the years. I am practicing my tried-and-true method of radically accepting, shifting my focus to what I can control, and prioritizing lifestyle behaviors that help me feel better physically and mentally.

There are still good and bad days, and there always will be. I know now that the point is not to eliminate the hard times, but rather to accept them, and learn how to recognize and navigate through those storms so you can get back to and enjoy the joyful and beautiful times life has to offer — that’s how you thrive while living with an illness. 

What inspired you to share your journey with others? Has connecting with others on social media with chronic illnesses helped your mindset? 

Throughout my journey with MS, I have always been open that I have it, but I did not begin sharing publicly on social media until 2018 — a full 15 years after being diagnosed.

By that time, I fully accepted MS and revamped my health and well-being, and I realized that it was possible to live a full and happy life with a chronic illness. But I never forgot how gut-wrenchingly lonely it was when I was first diagnosed. There was barely social media at the time, and back in 2005, there were very few people my age who had this illness.

Now, MS is diagnosed earlier (in people 20-50 years old) because medical diagnostic tools have improved. But back then, I was always the youngest by far at the doctor’s office, and the way people would respond to finding out I had MS made me feel like I was a unicorn — but not in a fun, unique way. 

I thought about all the time I lost being in denial and not taking control of my life with MS, and how I didn’t have someone to guide me through this rollercoaster ride. I didn’t want anyone else to have to experience that.

So, I started to share — and I mean really share — in an authentic and vulnerable way. I shared in a way that showed the ups and downs of life and how to ride the wave of living with chronic illness realistically — sans the toxic positivity. 

Initially, I hoped it would help others feel less alone, but it became more than that. Then, I realized that I had a unique perspective. My experience of living with MS for such a long time, coupled with my education (a B.S. in pharmaceutical sciences and M.S. in nutrition, an NASM Certified Personal Trainer and Behavior Change Specialist, and Certified Patient Leader) and my desire to tell it how it is could really make a difference.

I know that just my pharmacy background has helped me countless times, and I would be so confused with all the medical jargon without it. So, I share my story in a very real and unfiltered way to help others feel seen.

And, I help people understand all the medical lingo, learn what MS is and isn’t (I present a lot of evidence-backed info), be empowered to advocate for themselves, and (most importantly) learn how to live and thrive with MS.

Putting yourself out there and sharing your story can be healing by itself. But, to hear from others with MS that my story and perspective has positively impacted them and their MS journey is beyond amazing.

And the feeling is definitely mutual. Hearing stories from others — their experiences, and the highs and lows — has built so many connections and a community I otherwise would not have been a part of, and I absolutely love it. 

What’s been the biggest challenge of living with MS? 

There is no way to sugar coat it. For me, it’s the unpredictability. When I was first diagnosed, it was especially difficult, because all of a sudden it feels like the body you knew your whole life is gone. You’re left with a body that is a stranger. But it’s imperative to become besties with that stranger.

In the early days, I did this by tracking how I would feel. I paid attention to the amount of sleep and activity I got, how I ate, if I was hydrated or stressed, and how those variables would affect my daily MS symptoms. I learned my triggers and things that helped, too. This taught me about my body and mind with MS. Knowledge is power, and with this new info, I could take ownership and help myself as much as possible. 

Knowing how to be my healthiest self with MS has helped minimize the uncertainty. And, now 18 years in, I can confidently say there will always be unpredictability.

Striving to control it ALL is not possible for anyone. I try to control what I can and let the uncontrollable things go. But to be honest, not knowing how I will feel when I wake up is still challenging at times. I can stay active, eat well, hydrate, sleep, and minimize stress, but I still may wake up feeling terrible. That’s just how it is.

Most of the time, I find comfort in knowing that I did all I could to set up myself for a good-feeling day. However, there is also a lot of frustration in knowing I can’t control it 100%.

That being said, I know I will never be able to control it completely, and ruminating on that is not going to benefit anyone, especially myself.

So, when those days happen, I try to limit wishing for things that are not possible. Instead, I focus on what I can control and try to stay in my lane. I step back and observe how my body and mind are feeling, accept it, and make whatever modifications to the day that I need. I try to do all that without guilt or shame — sometimes, that’s easier said than done!

Since I can be hard on myself, I make it a point to speak to myself like I would to a friend going through a hard time. It’s more compassionate and makes a hard day a tad easier, instead of adding salt onto the wound by being mean to myself. 

Challenges will always exist. And yes, having MS brings its own set of unique hardships to the forefront that maybe you weren’t expecting and that others don’t always understand. On top of that, each person with MS will have their own set of hurdles to work through, big and small, but that’s life, isn’t it? Fighting that forever will get you nowhere.

Instead, be mad, be sad, grieve, process what is happening, but don’t get stuck. Feel your emotions, channel that energy into action, and work your way through that challenge like you have with so many other challenges in the past. 

What advice do you have for others living with MS?

1. Always keep track of any symptoms, tests, appointments, etc. As the years go on, you’ll find that it’s really helpful to have a record of everything, because things will start to blur together.

2. Throughout the journey with a chronic illness, you spend a lot of time at the doctor’s office. Healthcare professionals have expertise, but not (usually) the lived experience. Some are great at listening and being respectful, and others have plenty of room for improvement. It can be emotionally and physically draining, but find doctors that really listen, and respect you and your experience. You need people on your team that are in your corner. Always advocate for yourself — it can be exhausting but it’s absolutely critical.

3. Listen and learn about your condition and your body. Everyone is different, and the more you know about how different variables (e.g., diet, activity, sleep, stress, hydration level) affect your body, the more you can live in a way that helps you. It also allows you to shift your focus from the what-ifs and unknowns to something you can control after diagnosis. 

4. The ups and downs are inevitable. Fighting them is a waste of time and energy. Learn that they will come and go, and that change is the only constant.  

5. The journey is what you make it. Your thoughts, behaviors and actions will shape your experience, so make those things work for you and not against you. Be nice to yourself and don’t beat yourself up. Remember: You have the power. 

6. Chronic illness doesn’t take away your choices, it just changes the choices you have. Accept that and look for what you can do vs can’t. 

7. Of course you don’t want a chronic illness, but that isn’t within your control. What you can do is accept that two things can be true at once: it can be hard, and you can move onward and shift your focus to things you can control instead. 

8. Take anything you hear from others with a grain of salt, especially if they don’t have a chronic illness. If whatever the sentiment is doesn’t sit well with you, then ignore it.

9. Don’t stop living. Life isn’t over, it’s just different. 

10. Find community. There are so many ways to connect with others who will get what you are going through. You are not alone in this.

You can follow Sam on Instagram @slsalvaggio

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