"The things they didn't teach us" The experience of losing who you were and learning to live with who you’ve become

No one really explains how much illness changes your life. One day you’re doing everything you used to, and then slowly, things start slipping away—plans, routines, even pieces of who you thought you were. There’s a kind of grief in it, but also a strange determination to keep going, even when nothing feels the same. These are the moments that show what life looks like after everything shifts, and how you learn to keep living in a different way.

“A year on and I’m struggling more than ever to even simply get out of bed. I suffer from excruciating stomach pains, digestive problems, heart complications, and blood complications. Still no diagnosis or treatment in sight for any of it.”

"a battle that nearly cost me my life..." A story of medical negligence, and a search for a label.

“While others were making memories, I was learning how to move my fingers again… This is not the story I would have chosen.”

"...the pain grew louder—a constant, unrelenting ache that handcuffed me to my bed. Fatigue became a shadow I couldn’t outrun" - Noelle's journey with FND

“A year on and I’m struggling more than ever to even simply get out of bed. I suffer from excruciating stomach pains, digestive problems, heart complications, and blood complications. Still no diagnosis or treatment in sight for any of it.”

"Having 18 years of life one way and one day you wake up and your whole life changed" a life consumed by Crohn's Disease

“From that moment on, I knew I had to take control of what I could. I started prioritizing my diet, reducing stress, and paying closer attention to my body. It wasn’t an overnight fix, and the journey has been far from easy, but I’m incredibly grateful for how far I’ve come.”

"I woke up and couldn’t walk. My hip was in unbearable pain, and no matter how much I tried to move, my body wouldn’t cooperate" - Jordan's story with Rheumatoid Arthritis

“I still make regular trips to the hospital, but two weeks ago, I found a specialist who spent three and a half hours with me, thoroughly explaining my conditions and laying out a plan.Though my conditions are rare and incurable, I keep moving forward.”

"I lost all feeling below my belly button and could no longer walk, often collapsing to the floor, completely paralyzed from the waist down." - Breanna's story battling CRPS, FND, AMPS and more.

Life after illness is about learning how to live differently, how to navigate a body that doesn’t move or feel the way it used to, adjusting dreams to fit a new reality, and finding meaning in the moments that remain. It can be dimmer, sometimes lonelier, filled with both grief for what was lost and gratitude for what’s still there. You learn to celebrate the small victories most people overlook, and you begin to see strength in simply enduring. These stories remind us that even when life is forever changed, it is not without purpose. There is still growth. There is still hope. And there is still a future, even if it looks nothing like the one you imagined.

Clinical definitions will never capture the full weight of living with these conditions.

But we can.

Chronically Me.