Unlike most of my peers, I spent the majority of my twenties living through the physical and emotional rollercoaster of a mysterious chronic illness that literally turned my life upside down. At my lowest point, I had suddenly and inexplicably lost 12 percent of my body weight, couldn’t walk the short distance from the front door to my mailbox, was living with unceasing muscle spasms and constant pain at a 9 on a scale of 10, was covered with a completely unattractive rash on my face, my hair was breaking off, and I was sleeping less than four hours a night. It was, as you can imagine, a party 24/7.
Shuffled from specialist to specialist, I was diagnosed with a dizzying array of conditions, including fibromyalgia, chronic fatigue syndrome, migraines, trigeminal neuralgia, reactivation of the Epstein Barr virus, hypothyroidism, a blood clotting disorder and a rare, congenital brain disorder (which somehow didn’t show up in imaging until my 20s—after years of multiple specialists telling me I had this, I was told I definitively did not).
One doctor said, “You can’t expect to get any better than this.” I called his bluff, and I was determined to find my path to better health, even when no one seemed to know exactly what was wrong with me.
I eventually started making progress in the right direction and even have a fun, rather full life along the way—though I definitely still experienced my struggles. And then, finally I found the doctor who seemed convinced I was, as I suspected all along, living with an autoimmune disease.
Lupus is an autoimmune disease where the immune system begins to attack any organ system in the body as if it were dangerous foreign substance. It is estimated that 1.5 million Americans live with disease—the majority of which are women, usually striking during their childbearing years.