Living with Ehlers-Danlos Syndrome: A Daily Battle
Ehlers-Danlos Syndrome (EDS) is an umbrella term for a group of genetic disorders that manifest in various ways, affecting different joints and organs with a broad range of severity. No two individuals with EDS are alike. We often refer to ourselves as “zebras” because while doctors are trained to think of the most common diagnoses, they rarely consider the rare or unusual—like a zebra among horses. We are the zebras in the medical world.
While there is no cure for EDS, its symptoms can be managed individually. However, this can be tricky because many people with EDS need to see several specialists to address each of their symptoms or comorbidities—sometimes it feels like a full-time job. Managing these health conditions can be exhausting and time-consuming, draining both our energy and our time.
I see several specialists, including a cardiologist, electrophysiologist, pulmonologist, cardiothoracic surgeon, rheumatologist, neurologist, ENT, endocrinologist, gynecologist, gastroenterologist, and of course, my general physician. I also occasionally see a chiropractor for traction and to use equipment that helps strengthen my lower back. I don’t currently have access, but I also need to see a geneticist, nephrologist, ophthalmologist, and orthopedic specialist. That’s about 12-16 specialists every 3-6 months, which adds up to roughly 56 doctor’s appointments a year—just for check-ups and management! And that doesn’t count the six or more trips to the emergency room or hospital admissions that I average annually. Some years, like last year, I had a pacemaker implanted and several surgeries. Last year, I also had close to 50 ER visits, but we’ll save that for another time.
A typical day for me starts between 2 and 4 a.m., waking up with lower back pain, thirst, and multiple trips to the bathroom. I never truly get a full night’s sleep. My body has a dysfunctional nervous system (dysautonomia) and I suffer from Neurocardiogenic Syncope, Postural Orthostatic Tachycardia Syndrome (POTS), sleep apnea, and issues with blood pressure, heart rate, temperature regulation, and more. My pain level never dips below a five on the 1-10 scale—it’s always there, even if I don’t acknowledge it. If I lie in bed too long, my body gets so sore that I can’t stay down, no matter how sick I feel. I can’t sleep for more than six hours without needing a break to alleviate the pain.
By morning, I take most of my medications and supplements, starting my day with a headache, nausea, and low blood pressure, feeling like I’ve been hungover without the fun of tequila. As the day goes on, every part of my body aches. Despite not doing much, I feel utterly fatigued and worn out. I can’t be around strong perfumes, chemicals, or any food additives without triggering a runny nose, body aches, and migraines with visual disturbances (aura). About five times a day, I experience numbness in my lips and left hand—no one knows why. My symptoms can mimic a stroke, and I worry that if I ever have one, I won’t recognize it.
Chemical sensitivities make life harder to navigate. Wearing a mask and monitoring my food intake helps, but I still can’t avoid triggers entirely. By 5-6 p.m., I’m ready to collapse. Some days, I push through with a smile, determined to live life to the fullest. I strive to be the best mother, wife, friend, student—whatever roles I’m juggling—because I refuse to give up, even when it feels impossible.
By evening, after making it through the day, I often feel cold but somehow burning up at the same time. My body temperature reads 96-97 degrees, making it incredibly uncomfortable to feel hot and cold at once. My chest feels heavy at night, and when I lie on my back, I start to feel fluid accumulating in my lungs. On tough nights, I struggle to breathe deeply and sometimes wake up gasping for air with a racing heart and low oxygen levels. Memories from past hospital visits, ER trips, and chaotic arrhythmias flash back, and I close my eyes, hoping to make it through to the next morning. And when the morning comes, it starts all over again.
Living with chronic pain and frequent hospital visits can lead to depression. I’ve recently coined the term “Post-Traumatic Health Disorder” to describe the emotional toll that constant health battles take. We can feel as though we’ve lost the person we once were and become prisoners in bodies that no longer feel like our own. Over time, friends may drift away as we cancel plans, relationships can become strained, and many doctors don’t take us seriously, often mislabeling us with anxiety or offering a catch-all diagnosis. We feel alone, misunderstood, and overwhelmed.
Having an invisible illness is a battle, and those of us who live with it see ourselves as warriors. Every day is a fight. We often shed tears and watch others in our online support groups face similar struggles. We’ve lost some along the way, and we’ve seen others give up. But we keep fighting. We support one another, raise awareness, and continue to push forward, one day at a time.
To those of you reading this who are fellow warriors, I believe you. And to everyone else, always be kind—you never know what battles someone is fighting beneath that smile or behind their makeup.