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I awoke to bright sunshine bathing the side of my face. For a moment, the soothing warmth felt nice, but it was soon replaced by burning, searing pain. My breath hitched, and I immediately reached to my left side. Where was I? What had happened? My head ached, my throat…

It’s the sensation you get when you’re walking up a flight of stairs and feel like you’re breathing through a straw. It’s the terrifying moment when your scope of vision begins to shrink just before you black out. It’s your legs burning and feeling like Jell-O when you’ve been standing…

Note: This column was updated Jan. 16, 2025, to correct that Soliris is an antibody therapy. The slow, steady beat of heart monitors echoed through the dim halls. I could hear the occasional whisper of nurses and the sound of my blood pressure cuff clicking on and inflating at regular…

Note: This column was updated Jan. 16, 2025, to correct that Soliris is an antibody therapy. This column describes the author’s own experiences with vitamin D. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy or supplement. “Oh, my God, Shay!…

A nurse I hadn’t met entered my room in the intensive care unit carrying an IV bag full of red liquid. She cleared her throat to have my friend and I pause our conversation. “Hi, I’m here to bring you some blood products, but I have a consent form that…

Precariously balancing my right foot on the ledge proved difficult after having lost so much muscle mass over the past six months. My left leg, which was supposed to be supporting the bulk of my weight, began to tremble. Steam rose around me, setting the scene, but it made me…

“Take one dose, three times daily.” “Take one dose, once daily with food.” “Take one dose every four to six hours or as needed.” “Take one dose with 8 ounces of water.” Like me, many people with chronic illness have to manage a complicated list of medication instructions every day…

Note: This column was updated Jan. 16, 2025, to correct that Soliris is an antibody therapy. “How are you feeling?” Just hearing that question releases a hot flash up my neck. My stomach drops, and before I know it, my eyes are rolling. That’s because I know I’ll respond with…

Living with a rare and chronic illness is undoubtedly one of the hardest things I’ve ever done. Nearly dying in the hospital and spending almost two months in the intensive care unit was just the beginning. The experience changed everything in my life — but ultimately, it’s changed my life…

Note: This column was updated Jan. 16, 2025, to correct that Soliris is an antibody therapy. A few years ago, I lost my home and career, my car broke down beyond repair, and I nearly died from a rare disease. I was alone in the hospital and apart from my…