spoonie

‘Did you think we were ‘lucky’ to stay in bed while you go to work? Reach out to us.’: Fibrodysplasia Ossificans Progressiva warrior says, ‘Check on the people you know who have to stay home for disabilities’

“How have you viewed their lifestyles? Are you already starting to get bored at home even though it hasn’t been that long yet? Think of those who were already isolated away from society, and those who will continue staying inside long after the pandemic ends.”

‘I watched friends celebrate, while I was robbed of living life. The Internet is a blessing and a curse.’: Woman with Cystic Fibrosis gives tips on how to survive quarantine, ‘The limits are endless’

“One issue a lot of people face is in their time of solitude, they may be confronted with the fact that being by yourself is frightening. Your mind needs to become comfortable being alone. There will be no distraction. Your inner-monologue will inevitably be louder and more present than it ever has before.”

‘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.”

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