Navigating the Storm      

         Living with multiple chronic illnesses is like navigating a constant storm. I have what’s become my “chronic disease soup”—a mix of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), postural orthostatic tachycardia syndrome (POTS), fibromyalgia, cranio-cervical instability, mast cell activation syndrome (MCAS), and hypermobile Ehlers-Danlos syndrome (hEDS).

         While having one chronic illness is challenging enough, many of us juggle multiple, and the impact on daily life is profound. I contracted ME/CFS as a teenager after a breakout of mono in our school but I didn’t get an official diagnosis until 2016, and the others followed soon after. Three years ago, I became homebound and mostly bed bound, which has transformed how I experience everything—from my relationships to my role as a parent. I work to stay positive, but the reality of chronic illness means constant ups and downs, physically and mentally.

Silver Linings- Finding Hope in the Struggles

         Despite the challenges of living with chronic illness, I’ve discovered silver linings along the way. My relationships have deepened, and I’ve formed meaningful connections with others who truly understand the daily struggles. My empathy has grown, and I’ve learned to cherish the little blessings life has to offer.

         One of the most positive outcomes of this journey has been the creation of my children’s book, Twirl with Me, Mama! Inspired by my own experiences, the story follows a young girl named Ivy, whose mother has a chronic illness. Ivy struggles with the unfairness she feels when comparing her life to her best friend Lily’s, but in the end, she learns that every family is unique, and “different” is what makes them special. Writing this book has given me purpose, helping me turn my personal struggles into something that can support and uplift others facing similar challenges. In a world where chronic illness often feels isolating, I believe we need each other—whether for support, advocacy, or shared understanding. While progress is being made, more research is crucial, and I remain hopeful that one day, we will find a cure for these diseases. Until then, I hold onto my faith, family and the hopes of one day healing.