living with a chronic illness

‘I probably won’t outlive my sister or may not be able to see my children grow up. ‘Do you feel like a burden?’—Yes, I do’: Woman with Cystic Fibrosis details journey, ‘If you search for the silver living, you’ll always find it’

“I had no energy to move, let alone scream. My parents had nothing to be concerned about. All was a mystery. I hid behind the paper and the little book in my wardrobe no one knew existed. I was fine about everything and I sort of still am, but I don’t want to die yet.”

‘My mom noticed a hole above my tailbone she could fit her pinky into. The doctors told her, ‘As long as it’s covered with skin, it’s nothing to worry about.’: Woman with spina bifida and fibromyalgia suffers from ‘back attacks’ and ‘wild symptoms’

“During birth, the umbilical cord was wrapped around my neck. In order to save my life, the doctor had to act fast. My mom’s tailbone was broken. Then like any other mom, she diligently looked over my body and immediately noticed a hole above my own tailbone. The doctors told her, ‘It’s nothing to worry about.’ But at 7 days old, I had a temperature of 104 degrees. As I grew, so did the tumor. It tightly wrapped around my bladder and kidneys, slowly killing me.”

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