This was the day that changed the course of my life.
An offensively long essay about how life lessons from Tori Amos have helped me see that anger and rage can be useful, but in the end compassion, creativity and setting fire to long-held assumptions may be the only way to end the Lyme disease wars.
Those of us who have navigated the surreal (how did that word become the best descriptor for real life?) nature of Lyme disease, both the symptoms and attempts to find medical treatment, suddenly have several opportunities to find hope in the waters of chaos.
Almost 30 Years Ago, The Golden Girls Showed How Nobody Believes Chronic Illness Patients. Nothing Has Changed.
In 1989, Golden Girls TV character Dorothy Zbornak was mocked by doctors for pretending to be ill. She was treated exactly the way Lyme disease patients are treated today–and she was really sick.
People who have chronic illnesses frequently end up suffering alone in silence. Today, with the omnipresence of social media, many of us “scream” into the empty void of the world by posting these “invisible illness” or “silent epidemic” memes hoping that other people will see them and understand the unobservable suffering that we experience.
The Patient-Centered Care Advocacy Group has filed a citizen petition with the U.S. Centers for Disease Control and Prevention (CDC) asking it “to end the preferential treatment it extends to the Infectious Diseases Society of America (IDSA) guidelines for diagnosis and treatment of Lyme disease.”
A lot of reporters say, “Oh, if you get bitten, you just get treated and it’s fine, right?” Nope. Not that simple.
A New York City-based news team is calling on the CDC to clarify allegedly false remarks made during a recent interview about Lyme disease.
People keep asking me, “What were your symptoms? How did you know you have Lyme disease?” To say “it’s complicated” is an understatement.