Within five short years, Paige Butas went from competing in triathlons to becoming a well-known multiple sclerosis (MS) advocate on TikTok. Her shock at her first symptoms, delays in getting a diagnosis, and difficulty finding doctors who listen will be familiar stories to many with MS.

Paige’s story is not just about learning to adjust to life with a chronic condition and the challenges of accessing medical care. It’s also about fostering a community of support and awareness through her advocacy.

Denial Was Strong

In March 2018, what began as a persistent headache spiraled into symptoms that made Paige wonder whether she was having a stroke. She headed to the emergency room.

“The MRI results hinted at MS, plunging me into shock,” Paige recalled. There was a stark contrast between her athletic lifestyle and the symptoms she experienced.

Although initially in denial, Paige eventually faced a relapse in 2022 that solidified her diagnosis. The journey from disbelief to acceptance was fraught with emotional turmoil. “Denial was so strong, I ignored it … but deep down, I knew this relapse meant I would finally be officially diagnosed with MS,” she explained.

Educating Herself and Others

Paige’s path to understanding MS began in isolation. With limited personal connections to others with MS and initially scant support from her medical team, she decided to educate herself. She read clinical studies, gradually translating dense medical jargon into accessible information, which later became a cornerstone of her advocacy on TikTok.

“I was surprised how much had developed just within a few years,” Paige remarked, highlighting the pace of medical advancements in MS research.

Finding the Right Team

Paige’s relationship with her health care providers has been a journey of its own, from initial missteps and feelings of being gaslighted to finally assembling a team she trusts. “I haven’t had a team that I trust and rely on until recently,” she explained.

In the beginning, Paige said, “I was still very naive and trusted all doctors 100 percent.” The first two neurologists Paige visited were dismissive of her experience and reluctant to prescribe medication or refer her for cognitive testing. She kept looking until she found specialists who would listen.

“It took time and self-advocacy to find the right team,” she stated.

Adapting to a New Lifestyle

Transitioning from endurance sports to shorter, more manageable bursts of exercise, Paige adapted her physical activity to manage her symptoms effectively. She also found solace and a creative outlet in spray paint art, which she shares with the MS community online. Adjustments also included a significant career change due to MS cognitive symptoms she’s experienced.

The realignment of Paige’s life led her to TikTok, where she began sharing her story and educational content about MS. What started as a personal outlet blossomed into a thriving online community where support and shared experiences form the bedrock of daily interactions.

“We’ve become a close-knit group, always there to support each other,” she noted. Her efforts during MS Awareness Month helped catalyze a broader visibility for MS on social media, empowering others to advocate for themselves and educate their social circles.

The Role of Loved Ones

Paige attributes a significant part of her resilience to unwavering support from her husband and close friends, many of whom she connected with through her advocacy work. “My husband is my rock. When I don’t believe in myself, my husband is the one that changes my mindset,” she said. She admitted that he’s also becoming her caretaker, and this aspect of their relationship is still hard for her to accept.

Paige has also been able to meet several friends from her MS advocacy on TikTok in person. “One person in particular I consider my best friend,” she explained. “I make an effort as often as possible to go visit her. We even got matching tattoos.”

To those newly diagnosed, Paige emphasizes the importance of keeping active, both physically and mentally, as a strategy to manage the disease proactively. She offered these words of reassurance: “You’re going to be OK. Adjustments are necessary, but they will guide you to a new way of thriving.”

Talk With Others Who Understand

MyMSTeam is the social network for people with multiple sclerosis and their loved ones. On MyMSTeam, more than 211,000 members come together to ask questions, give advice, and share their stories with others who understand life with MS.
Has finding an MS community helped you live better with a chronic illness? Share your questions and experiences in the comments below, or start a conversation on your Activities page.