spoonie

‘No cure? Like forever?’ I’ve been shot in a drive-by shooting, and I’d still take that pain over Crohn’s. I was so angry.’: Young woman learns to live with invisible illness, ‘It’s not the end of the world if you have to pull over, or ruin a pair of pants’

“Suddenly I could not keep any food inside of me, from either end. I was losing weight fast. The weather was nice so my boyfriend and I went to a restaurant on the waterfront for dinner. Afterwards, he took the long, scenic way home. I was in intense pain and needed to get to a bathroom. We finally arrive and he insisted on walking me to the door, not realizing I was ready to sprint. The minute I shut the door behind me, I projectile vomited all over the entryway. I became a homebody. I was accused of things like, ‘You just want pity. You’re lazy.’”

‘Two months before college graduation, my symptoms returned. The bloat, the blood, stomach pain, and fatigue.’: Young woman diagnosed with severe Ulcerative Colitis, ‘I felt I would never get my life back, now I embrace it all’

“‘Natalie. He died.’ I can still remember it like yesterday. Being woken up in my freshman year dorm from a call. All I remember next is screaming, ‘No, no, no, no, no!’ Dead. Died. Gone. As time went on, I started feeling sick. Very sick.”

‘I’m often mistaken for being lazy or spoiled. The dirty looks I get would shock you. I may look like a typical 23-year-old, but I’m not.’: Woman with multiple ‘invisible’ chronic illnesses refuses to let struggles ‘overcome her joy’

“My determination isn’t disabled, my fire isn’t disabled, but my body is. For a long time, this was hard to admit. I do my best to show up every day, but it’s not always enough. I can practically smell the resentment from my coworkers. My boss stopped believing me and asked for a ‘doctor’s note.’ Instead, I ended up hospitalized. ‘Is this good enough?’ I snarkily asked. I know I should keep my mouth shut, but I really can’t help myself. The struggle is REAL.”

‘After a yoga session, my spine slipped forward. I couldn’t move. I couldn’t roll over. I was a vegetable.’: Woman with Spondylolisthesis, chronic illness claims ‘pain is inevitable,’ but ‘suffering is optional’

“I remember laying in bed, feeling trapped inside myself. I had no idea at the time this injury would turn my world upside down and become the barometer for all the decisions I made for the rest of my life. Working, having a family, being active, or doing all the things a normal 30-something-year-old should do are no longer an option.”

‘Minutes after being born the doctors noticed my skin peeling from just being wrapped in the typical blanket they use with newborns’. Woman describes the pain of living with Recessive Dystrophic Epidermolysis Bullosa

“There’s often the misconception my illness is not a big deal and it’s ‘just a skin condition.’ If my illness was as minor as people tend to believe I wouldn’t have lost the ability to walk over the years, or my hands wouldn’t be webbing from years of scarring and friction.”

‘Help!’ I banged on the wall. My parents were downstairs. I reached for my nebulizer, but quickly realized something was wrong. This is when I remember feeling very calm and a sense of peace.’: Young woman learns ‘lesson’ after near-death experience from whooping cough

“Before bed, my dad asked if I needed to go the the hospital. As a stubborn 19 year old, I somehow talked my way out of it. I told him I was ‘fine’. The next thing I remember, my parents were rushing downstairs. They immediately tried to put my nebulizer mask on, but for some reason I was pushing it away. I woke up in an ambulance. I still feel guilty about that night.”

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