I felt waves of emotions (fear, relief, validation) before anger set in. My years-long mysterious condition was a full-fledged epidemic affecting 1 in 5 Americans, and I wanted to shout it from the rooftops so others wouldn’t have to go through this, too.
New to TikTok, I posted a video about the symptoms I was told were “normal” that turned out to be signs of autoimmune disease. To my shock, it racked up millions of views in a matter of hours, and thousands of comments from women reaching out with eerily similar experiences.
Search #autoimmunedisease on TikTok and you’ll get a very real and terrifying snapshot of this epidemic’s stronghold on women in America: over 1.1B video views, and countless thumbnails featuring the faces of twenty- and thirty-somethings just like me. We’re turning to TikTok for the autoimmune support our medical system isn’t giving us.
The autoimmune epidemic disproportionately wreaks havoc on women – 80% of patients are women1, and certain conditions are 16 times more common1 in women. They are one of the top 10 causes of death for women under 64. Despite all of this, autoimmune disease remains largely overlooked and misdiagnosed by healthcare professionals. On average, we have to see 5 different doctors and wait nearly half a decade before receiving the correct diagnosis. Almost half of us are told our symptoms are all in our head at some point along the way.
It was no coincidence when my sister, Claire, was diagnosed with autoimmune disease months later. She had similar, hard-to-pinpoint symptoms, normal labs, and dismissals from various doctors.
Getting healthy again quickly became a full-time job for both of us. We threw ourselves into learning everything there was to know about these diseases, and what evidence-based interventions would bring us the most relief. As we dove into the research, it became abundantly clear how underserved our community was and how desperately we needed better support and tools. So we decided to team up and left our full-time jobs to fill the major systemic gaps that exist in today’s standard of care.
Last year, we launched a virtual care platform called WellTheory to help women shortcut, and ultimately improve, the current path to an autoimmune diagnosis and receiving care. Our goal is to increase access to high-quality autoimmune care – making it affordable, empathetic, empowering, effective, and what we so desperately needed from the beginning.
But WellTheory is just one piece of the equation to reversing autoimmune disease. More broadly, it takes arming women with the resources to navigate the under researched and overlooked health issues that affect us the most – from fertility and menopause to autoimmune disease and beyond.