Changing the Face of Parkinson’s Through Social Media

Deep in the heart of TikTok, there’s a movement that the typical user might not know about, a small but growing movement to change the face of Parkinson’s and reduce the stigma around the disease.

For better or for worse, over the past decade, social media has cemented itself as an essential source of information.  At the same time, the number of people diagnosed with Parkinson’s each year has skyrocketed to nearly 90,000 a year in the United States alone.  Many of these individuals turn to social media to learn more about their diagnoses and seek support.  In the past, these individuals would be confronted by a picture of Parkinson’s disease (PD) that was too often unflattering, unhopeful, and untrue to their experiences.

For a long time, Parkinson’s was seen as an inevitably debilitating disease reserved for only the oldest and whitest of men.  In reality, Parkinson’s doesn’t discriminate.  Parkinson’s impacts people of all genders, races, and backgrounds, and how it presents itself can vary vastly from person to person.  That’s where TikTok comes in.  In their search for information and community, creators with Parkinson’s from across the country have come together on social media to paint a more nuanced picture of Parkinson’s.  By sharing their journeys with Parkinson’s on platforms like TikTok and Instagram, these creators show how Parkinson’s and Young Onset PD can impact people from all walks of life.  Moreover, these creators shine a light on often-overlooked symptoms and treatments.  This can provide much-needed validation and hope to those who are newly diagnosed with Parkinson’s and their loved ones.

Beyond sharing their stories, over the past few years, creators with Parkinson’s have formed deep bonds and even friendships over social media.  They answer questions, offer support and advice, and stay updated on each other’s victories and trials as they navigate life with Parkinson’s.  As a social media specialist working for a non-profit aimed at empowering people with Parkinson’s, the work I’ve seen creators with Parkinson’s do to raise awareness about PD validates my belief that social media CAN be used to make the world a better place.