“She asked me to read the top line with the largest print. I told her, ‘I can’t see it.’ I could hardly mutter the words as tears filled my eyes and streamed down my face. My internal panic set in.”
‘I tipped over, slamming my head. ‘I can’t see anything!’ The doctor said, ‘Your life will be less fulfilling now.’: Multiple Sclerosis warrior recounts journey, support from husband
‘I looked at the poop bag and cried. ‘I’d rather die.’ I didn’t want my partner to stop loving me.’: Woman with ulcerative colitis advocates for stomas, ‘Every body is worthy’
“I was toxic. ‘You need emergency surgery.’ The thought of having a bag was the worst thing possible. I refused to discuss it.”
‘Please don’t take this away from me!’ On my wedding day, I was covered in hives. I felt like I was dying.’: Woman receives ‘life-changing’ Ehlers-Danlos Syndrome, autism diagnosis at 39
“When the doctors saw I was on several medications, I was sent home and told, ‘Get a hobby.’ Even shampoo and cologne sent me into pain. I felt like I was drowning.”
‘It’s probably stress.’ My newly retired parents became full time caregivers. Waking up was worse than my nightmares.’: Man with chronic illness turns life around, ‘I turned pain into purpose’
“I now raised a finger signaling, ‘Yes.’ This was how I communicated. I felt like a burden to my friends. An injury twisted the fate of my entire life.”
‘Numbness consumed my whole left side. ‘You’re tying your boots too tight.’ The next thing I knew, I collapsed.’: Navy Ordinanceman battles MS during leave, ‘Be the person you need to be’
“I couldn’t move nor feel the entire left side of my face. I chewed a hole on the inside of my cheek due to no feeling. Looking at my mom and sisters’ faces filled with tears, I knew it wasn’t good.”
‘I worked 9-5 trying to hide the pain. My job still let me go. I realized just how sick I was.’: Woman gets masters degree despite mystery chronic illness
“I was experiencing odd symptoms, such as chest pain, sweating, and tingling in my limbs. Yet, I had no diagnosis.”
‘My doctor was disinterested in my health. ‘It’s a circus people disease. You don’t have it.’ I felt defeated.’: Woman diagnosed with Ehlers Danlos, ‘I’m thankful for those who’ve stood by me’’
“Overnight, I woke up ill. I was met with disbelief and put-downs. ‘Girls your age struggle with anxiety.’ I struggled to walk up stairs. I would wake up from a full night’s sleep and need to go back to bed an hour later.”
‘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.”
‘My condition has no cure. Stopping treatment due to the coronavirus is not an option.’: Pityriasis lichenoides chronica patient details impact of pandemic, ‘I cannot stay home and self-contain’
“My nurse said, ‘I still have a packed schedule.’ I cannot stay home and self-contain.”
