A Day in the Life with Ehlers-Danlos Syndrome

Morning: The Struggle to Start

Waking up is the first battle. My body feels like it’s been hit by a truck—joints stiff, muscles aching, and fatigue still weighing me down despite a full night’s rest. My fingers feel swollen, and my wrists pop as I reach for my phone to check the time. I slowly stretch, careful not to dislocate anything. It’s a delicate balance—too little movement and I’ll stiffen up worse, too much and I risk pulling something out of place.

Getting out of bed isn’t as simple as sitting up and standing. My blood pressure drops the moment I move, sending my heart racing. I sit on the edge of the bed for a minute, willing the dizziness to pass. POTS (Postural Orthostatic Tachycardia Syndrome) is a lovely addition to my Ehlers-Danlos Syndrome (EDS), making basic things like standing a challenge.

Mid-Morning: Pacing Myself

After a slow start, I make my way to the bathroom, bracing against the counter for stability. My joints are unstable, and my knees threaten to buckle as I brush my teeth. My fingers struggle to grip the toothbrush—some days, they sublux (partially dislocate), making it feel like I’m trying to use hands that aren’t quite mine.

Getting dressed takes planning. Buttons and zippers can be tricky on bad pain days. I opt for loose, soft fabrics—anything too tight or rough against my skin triggers pain. Compression garments help with circulation, but they’re a nightmare to put on when my hands aren’t cooperating.

I need to eat, but cooking is exhausting. A pre-made smoothie or protein bar will have to do. If I stand too long, my legs feel like jelly, so I lean on the counter or sit while I prep something simple.

Afternoon: The Energy Drain

By midday, pain is a steady hum in the background—sometimes sharp, sometimes dull, but always there. If I have work or errands, I pace myself. I use braces for support if needed, but too much reliance on them weakens the muscles over time. If I push too hard, I’ll pay for it later.

Brain fog kicks in, making it hard to focus. My thoughts feel sluggish, like I’m wading through molasses. Conversations take effort, and I forget words mid-sentence. If I have creative work to do, I do it in short bursts, taking breaks to avoid overexertion.

By now, fatigue is hitting hard. My body doesn’t produce or use energy the way it should, and even small tasks drain me. I lie down for a while, trying to rest without falling into a deep sleep that will make nighttime insomnia worse.

Evening: The Aftermath

Dinner is another hurdle. Sitting too long in one position makes my joints ache, but standing too long makes me lightheaded. I eat slowly, hoping my digestive system will cooperate—gastroparesis is common with EDS, making food sit like a rock in my stomach.

If I have the energy, I try to do something enjoyable—maybe sketching, working on a jewelry piece, or just watching a show. But even fun activities require energy I don’t always have. My hands cramp up, my shoulders ache, and eventually, I have to stop.

Night: The Restless Battle

Sleep is unpredictable. My body can’t regulate temperature well, so I’m either freezing or overheating. Joints slip out of place if I’m not careful, so I have to position myself strategically with pillows. Pain keeps me awake, and when I do sleep, it’s often light and unrefreshing.

Tomorrow will be the same—unpredictable, exhausting, but manageable. Because that’s what living with Ehlers-Danlos Syndrome is: adapting, pushing forward, and finding moments of joy in between the struggles.