Navigating MG in the TikTok Era: Patient Advocate Shares What She Wishes She Knew Sooner

When Megan was first diagnosed with myasthenia gravis (MG), she found herself overwhelmed by fear and uncertainty. Sitting in the emergency room, she turned to TikTok in hopes of finding clarity about what her future might look like. But the very first video she saw — a woman rising from a wheelchair after years of disability — sent her into a panic. Megan suddenly wondered whether she, too, would become wheelchair-bound or severely disabled.

In reality, her journey has been very different. Megan has never been in a coma, never needed a wheelchair and has been able to live a fairly typical life. That experience motivated her to create her own TikTok content to represent the “middle ground” — a more balanced and realistic view that isn’t solely focused on worst-case scenarios. She wants newly diagnosed patients searching for answers to see a spectrum of experiences, not just shocking or dramatic moments that may not reflect their future.

Megan explains that finding good, trustworthy information about MG is extremely challenging. The disease is often called a “snowflake condition” because symptoms and treatment responses vary widely from person to person. This makes it difficult to distinguish misinformation from information that’s true but not relevant to one’s own case. She encountered people online who were “cured” after thymectomy, others who were permanently disabled and many in between. Sorting through these stories can be confusing and emotionally overwhelming.

Because of this, Megan encourages patients to seek out credible sources — professional organizations, clinicians with verified credentials, and reputable MG groups, including You, Me and MG, an online community supported by Johnson & Johnson that offers support, increases education and awareness, and creates community for both people living with MG and the broader MG community. She emphasizes the importance of understanding who is behind the information you’re consuming: Is it a medical professional, a reputable organization or simply another patient sharing their individual story?

Megan herself reads clinical studies and digs into research, but she believes medical education should remain primarily the responsibility of trained experts. As a patient creator, she tries to stay in her lane by focusing on personal experiences rather than offering medical advice.

Her main message for newly diagnosed patients is to give themselves grace during the first few years. This early period is the hardest — when medications, dosages, doctors, insurance, symptoms and lifestyle changes all feel unfamiliar. Over time, she says, you learn your triggers, find treatments that work and gain a clearer understanding of your body.