invisible illness

‘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.”

‘My mother and stepdad sent me with a strange man in the middle of the night. ‘Was I traded for drugs?’ I was ten years old.’: Woman overcomes childhood trauma and rape, ‘I learned the power of letting go’

“As I threw the rock into the river, I said, ‘I forgive you,’ letting go of all the pain and resentment I had been carrying. Don’t get me wrong… the people who abused me in my past, who were supposed to care for me and protect me, did NOT deserve my forgiveness.”

‘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.”

‘It can’t be bad, you’re young. You look fine.’ I questioned whether my symptoms were in my head.’: Single mom diagnosed with rheumatoid arthritis, ‘I don’t know what tomorrow has in store, but I’m ready to fight’

“I went from busy full days of work to barely handling the commute. I struggled to keep up with other moms my age. Misconceptions such as, ‘Young people can’t get it,’ and ‘You look totally healthy,’ infuriated me. It’s not just a disease for the elderly. I wasn’t fighting only for myself, but also my son.”

‘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.”

‘Ma’am, have a seat.’ I wanted to scream, ‘Look at the scar down my chest, I’m not making this up!’ but it was too late. They didn’t believe me.’: Woman finally diagnosed with invisible illness Myasthenia Gravis after 6-year battle  

“I was written off as hormonal. My husband frantically demanded I be intubated. He kept screaming, ‘The oxygen levels don’t matter. She’s in a Myasthenic Crisis!’ I tried to take a breath. It was too late. All my muscles started twitching. I was flopping around on the hospital gurney uncontrollably. Suffocating. I was dying and no one was listening to my husband’s desperate pleas. I heard Code Blue called over the intercom and faded away. I didn’t wake for 2 weeks.”

‘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.’”

‘It’s time to consider a lung transplant.’ I was terrified of dying before I’d started living.’: Young woman with Cystic Fibrosis fights ‘to live the fullest life I can, in the time I am given to live it’

“My parents comfort me by saying, ‘We will get through this.’ I needed oxygen pumped into my nostrils at all times to breathe. I was afraid I was dying. I’ve seen videos where they interview elderly people on their deathbeds who are asked what they regret in life. Most people regret not having lived passionately, fulfilled and happy. I believed I would be one of them if I didn’t make a change.”

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