Hi, I’m Lizzie. I’m 17 years old, and I live with a trio of invisible illnesses: Postural Orthostatic Tachycardia Syndrome (POTS), Mast Cell Activation Syndrome (MCAS), and Functional Neurological Disorder (FND). These conditions make each day a battle but with the help of my faithful companion, Luci, my service dog. I navigate the ups and downs of life a little easier.
Imagine standing up and feeling like your body is about to betray you. That’s what POTS feels like. It’s a form of dysautonomia that disrupts the autonomic nervous system, causing symptoms like dizziness, fainting, rapid heartbeat, and fatigue. For me, just standing up can trigger a cascade of symptoms that leave me feeling like I’m about to collapse.
MCAS is another challenge I face. It’s like having allergies on steroids. My immune system overreacts to certain triggers, causing a range of symptoms from hives and swelling to nausea and difficulty breathing. It’s a constant game of trial and error, trying to pinpoint and avoid triggers in my environment and diet.
Then there’s FND, a condition that affects the functioning of the nervous system, leading to symptoms like weakness, tremors, and seizures. It’s unpredictable and often misunderstood, making it even harder to manage.
Living with these conditions is like walking a tightrope every day. One wrong move, one unexpected trigger, and I could find myself in a world of pain or unconsciousness. But amidst the chaos, there’s Luci, my saving grace.
Luci isn’t just a pet, she’s my lifeline. Trained as a medical alert service dog, Luci has an incredible ability to sense changes in my body before they happen. Whether it’s a drop in blood pressure signaling impending faint or subtle cues indicating an incoming seizure, Luci is always one step ahead. She alerts me with a nudge or a paw, giving me precious seconds to prepare or find a safe place to rest.
Having Luci by my side has transformed my life in ways I never thought possible. With her help, I can attend school, socialize with friends, and even enjoy outdoor activities with a newfound sense of security. She’s more than just a companion, she’s my guardian angel.
But despite Luci’s incredible assistance, life with chronic illness is still far from easy. There are days when the pain is overwhelming and the fatigue is all-consuming. There are moments of frustration and despair, wondering if things will ever get better.
Yet, through it all, I refuse to let my illnesses define me. I’m more than just a collection of symptoms. I’m a fighter, a dreamer, and a believer in the power of resilience. Every day is a battle, but it’s also an opportunity to find joy in the small victories and connect with others who understand the struggles I face.
If there’s one thing I’ve learned on this journey, it’s the importance of empathy and understanding. Invisible illnesses may not always be obvious to the naked eye, but they are very real and very debilitating. So, the next time you encounter someone struggling with chronic illness, remember to be kind, be patient, and above all, be compassionate.
Recently, however, our world has turned upside-down. In a distressing turn of events, Luci suffered severe injuries at the hands of an EMS team meant to help us. During an episode where I required emergency medical attention, the responders mishandled Luci, causing her significant harm. They forcibly took her leash from my grasp and dragged her out of the ambulance, resulting in torn ligaments in her knee, a badly injured paw, and the need for stitches.
The incident not only physically injured Luci but also left me emotionally shaken. To witness the being who has stood by my side through countless hardships being treated with such disregard was heartbreaking. The very people we rely on in emergencies exacerbated our distress instead of alleviating it.
Upon arrival at the hospital, the ordeal continued. Despite my vulnerable state after experiencing syncope and seizures, I was left unattended in the waiting room. Nurses passed by, seemingly indifferent to my urgent need for care. The lack of empathy and understanding further emphasized the challenges faced by individuals living with chronic illnesses and disabilities.
As we navigate the aftermath of Luci’s injuries, uncertainty looms over her future as a service dog. The possibility of surgery and retirement hangs heavily on us, casting a shadow on the once-bright partnership we shared. The thought of losing her as my constant companion is a fear I can scarcely bear.
Yet, amidst the adversity, there is hope. Luci’s resilience mirrors my own, and together, we will overcome this setback. Our story serves as a testament to the bond between humans and animals, as well as the need for greater awareness and compassion towards individuals with disabilities and their service animals.
Despite the challenges posed by POTS, MCAS, and FND, I refuse to let these conditions define me. With Luci by my side, I am empowered to live a life of purpose and resilience. Together, we will continue to advocate for ourselves and others like us, striving for a world where compassion and understanding prevail, and no one is left behind due to their health condition or disability.
Submitted by: Lizzie
