chronic pain

‘Miranda, stop it. You can’t be in that much pain. You’re being a killjoy. Knock it off.’ I was popping Advil. I lost all feeling in my leg.’: Teen battles Ewing’s Sarcoma after being written off, ‘I am a survivor, not a statistic’

“I was 15 and no one took me seriously. One day, the neurologist came back in and said, ‘Miranda, there’s no easy way to say this. We found something in your spine.’ Panic. Blackness. I nearly passed out. I was treated without any consent, which still haunts me to this day. I was hallucinating for 36 hours straight.”

‘I kept getting multiple UTIs. A male doctor asked, ‘Do you think the pain might be ALL IN YOUR HEAD?’ I felt mortified.’: Woman with chronic urinary tract infections urges ‘you are not alone’

“I’d receive a 3-day course of antibiotics and be sent on my way. It would clear up, but come back with vengeance. I was told it was ‘just because I was WITH my boyfriend.’ Fair enough, sex can be a cause, but what did other people do? Stay single for the rest of their life? I was at a loss. All the doctors suggested I was exaggerating.”

‘I was choking on my own saliva. I thought my life was over. Alex was laying on my face crying and I could feel his tears running down my face.’: Autism mom with lupus describes difficult journey, ‘The thought of not being with him haunts me’

“One by one, I will lose all ability to speak and move. I will lose mobility at an age that is way too young. It will take away from the joy I share with Alex, which is already limited and unfair. In the worst part of my life when I was physically sick and could barely walk, I was given the greatest gift of my life.”

‘Bring me breakfast in the morning if we’re still here,’ joked the doctor. The treatments were painful, I tried to be brave.’: Woman describes her journey with Complex Regional Pain Syndrome, ‘I never had a childhood, but hope I can have a good adulthood’

“I was always fragile. When I wasn’t sick, I was injuring myself. My skin would turn purple and red with spots, and everything burned to the touch. I was probed with questions and faced with students’ and faculty’s disbelief. ‘You don’t look sick.’ Using the school’s only elevator resulted in harassment.”

‘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.”

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