autoimmune disease

‘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 could never date someone without hair.’ I’ll never forget the look of disgust on his face.’: Woman with alopecia ditches wig, ‘It has shown me I can do anything I set my mind to’

“I would go into the bathroom stall during halftime and re-apply the tape that held my wig on. I saw nothing beautiful about my bald head. When they called me ‘baldy’ or said, ‘Lindsay is ugly,’ I believed it was true. I took my wig off mid-run. And for the first time, I saw nothing beautiful about it. I finally felt like I was the Lindsay I was always meant to be.”

‘When you see me in a handicapped parking spot, you roll your eyes. My husband explains, ‘She doesn’t get better from this. She ultimately dies from it.’: Woman with multiple chronic illnesses urges ‘not all disabilities are visible’

“When you see me in a handicapped parking spot, you might glare. You may even be like those who have said something rude or left a nasty note on my windshield. I sport titanium rods and screws that go from the base of my head to my mid-back. You wouldn’t know by looking at me I have a terminal illness.”

‘Smoking when you have cancer? Are you insane? You might as well jump in front of a train!’ My first time going outside as a baldie was horrible.’: Woman with alopecia advocates for hair loss, ‘I am beautiful, with or without hair’

“I was known for my beautiful hair. It was one of my biggest ‘selling points.’ One day, I woke up and my hair started to fall out. ‘When you are almost bald, please come back and we will look at it again.’ Five days later, I was back. I went from having really beautiful hair to being a baldie with a wig.”

‘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.’”

‘I’d rather die than have a poop bag attached to me.’ My boyfriend didn’t sign up for a sick girl.’: Woman with ulcerative colitis learns to ‘love herself’ despite invisible illness

“’Great, how do we get rid of it?’ The look on my doctor’s face immediately made my stomach drop. ‘There is no known cure.’ Everything I ate caused intense pain and had me running to the toilet. When I told my boyfriend, he nodded and we drove home in silence. I told him if he wanted to end the relationship I would understand.”

 Share  Tweet