An MS Diagnosis Took My Career In An Unexpected Direction

Demi Schweers is half of TikTok’s husband-and-wife team known as Demi and Tom, who share with their 2 million followers what it’s like to parent while navigating multiple sclerosis and infertility. Here, Demi talks about her diagnosis and what life is like as a working mom.

I first noticed something was off in the summer of 2020. It was July, and I was one month away from two major milestones — moving and marriage. My soon-to-be husband, Tom, and I had bought our first home in the suburbs of Pittsburgh and were preparing to move in. We were also in the final planning stages of our nearly 200-person wedding. When I suddenly began to feel exhausted all the time, I chalked it up to stress. I attributed the tingly, pins-and-needles sensation in my hand to the hours I spent on my phone researching New York state COVID protocols for our wedding. When my right eye became dry and I started to see orbs, I bought eye drops.

Had I taken a second to process what my body was trying to tell me, I probably would have concluded that something was wrong. Call it “ignorant bliss” but if it wasn’t moving or wedding related, I brushed it off.

A month after the move and the wedding, my sight got worse, so I made an appointment to have my vision checked. The next day, I lost vision in my right eye but I tried not to freak out and get carried away by all the “what ifs.”

The doctor said my eye was perfectly healthy. Suspecting it was neurological, she sent me to the ER for an MRI. It appeared I had a lesion at my optic chiasm, where the nerves in the eyes connect.

Now concerned, I began Googling possible causes and stumbled on multiple sclerosis. The more I read and began mentally checking off boxes for symptoms I’d experienced and dismissed, the more my gut told me that’s what it was.

More tests confirmed I had several lesions, so they admitted me to the hospital. Overnight, I lost all feeling in my right side and had trouble walking. The hardest part was not having Tom by my side due to COVID restrictions.

When we took our vows — “in sickness and in health” — we hadn’t seen this coming.

Two months later, I was diagnosed with relapsing-remitting MS, the most common form of the disease. RRMS often begins in your 20s or 30s; it involves flare-ups followed by stretches of time with few or no symptoms. The date was Friday the 13th, which seemed apropos.

As far as diagnoses go, mine was relatively quick, since MS can go undetected for years. As crazy as it may sound, I was relieved to put a name to everything happening. Now that I knew for sure what it was, my primary concern was learning how to keep myself in a healthy state and prevent the disease from progressing.

The news forced me and Tom to have some heavy conversations, the type that a lot of couples might never have. When we took our vows — “in sickness and in health” — we hadn’t seen this coming. Being a spouse and a caretaker isn’t necessarily mutually exclusive, so I came right out and asked Tom if he would be comfortable being my caretaker should my symptoms progress. He assured me he was. My diagnosis turned out to be one of the best things that’s ever happened for our relationship because we had to lay everything out on the table to eliminate any future resentment or frustration.

We had always planned to start a family right away, so my doctor prescribed a first-line injectable medication generally considered safe during pregnancy. After two miscarriages in 2021 and a challenging IVF journey, I got pregnant with our daughter, Nora, in 2022. She was born in 2023, and five months later, we found out I was pregnant again! This time with a baby boy due this summer.

Having been pregnant for nearly two years has been like a vacation from MS since my symptoms are virtually non-existent, which sometimes gives me weird impostor syndrome. This isn’t uncommon, though as studies show that changes in the body during pregnancy often contribute to fewer relapses.

Years earlier, I’d started documenting our lives on Instagram, mainly centering around home inspiration, DIY projects, fashion, and our pets. After my diagnosis and our experience with infertility, I began sharing more about our personal lives.

Two months after my diagnosis, we started a joint TikTok account. It was just meant to be a fun escape — a place for us to be silly, dance around, and prank each other. But since we’d already been vocal about MS and fertility on Instagram, the conversation just naturally carried over. It seemed to resonate with a lot of people; the more we shared, the bigger our community grew. By the spring, we had hundreds of thousands of followers, and we were connecting with people going through similar circumstances all around the world.

Despite the challenges MS presents, I don’t think we’d be in the position we are today as a couple or as content creators without it.

I used to work in sales, spending six hours a day in the car. During lockdown, I worked from home, but when it was time to return to the field, there was no way I could spend that much time on the road due to my health. I quit in October 2021. When paid partnership offers from all sorts of lifestyle brands started to come in, Tom and I decided he’d continue working and I would give content creation a serious shot.

We enlisted an agent to help with brand partnerships. Considering there was a period when Tom and I were both school teachers and didn’t bring in more than $30,000 each, we could hardly believe it when brands began offering us $1,000 to film a 30-second video.

Today our social media has grown to more than two million followers. I spend approximately six hours a day at home focused on content-related work, including partnership opportunities, shooting content, posting affiliate klinks, and exploring social media trends for inspiration. I also make a point of responding to as many comments and messages as possible, which isn’t easy considering we receive 150 to 200 daily.

MS is a big part of our lives, so I share everything from my morning regimen to the supplements I take to demonstrating how I give myself injections. Since the disease can make life unpredictable, I manage my to-do list by breaking it into four categories: “have-tos,” “should-dos,” “if I’m still feeling good,” and “if I have any energy left.”

Despite the challenges MS presents, I don’t think we’d be in the position we are today as a couple or as content creators without it. It’s taught me to be more present because I don’t know what tomorrow will bring. I could wake up and lose my vision again or be unable to walk.

The day of my diagnosis, I made myself a promise: MS would be something I have, not something I am. As long as it allows me to do what I want, I’m going to do my best to take advantage of that, because I know that might not always be the case.