“I’m told, ‘You will never see research being done because you’re too rare.’ I have lived my life with fear, against a silently ticking clock.”
‘You may only have use of your eyes and voice.’ I was told, ‘You should live a less ambitious life.’: Woman with GNE Myopathy says ‘knowing my body is temporary has caused me to truly live’
‘What are we supposed to do?’ It must be my fault. I turned to Google for answers and was terrified.’: Mom has surprise Down syndrome baby, ‘Life looks a lot different now than it did 5 years ago’
“She asked us, ‘Did you know he has Down syndrome?’ I was a little shocked. We told her, ‘No, we haven’t noticed.’ She simply said, ‘Well, he does,’ and walked straight out of the room. Her tone and her demeanor were so condescending. I instantly felt fear, anger, and guilt wash over. There were no offers for resources, no books or pamphlets, no direction on what to do next.”
‘So she’ll always be sick?’ I leave the office with an answer but no cure. ‘I’m not dying. I’m just 16 and past my prime.’: Chronic illness warrior battles lupus and fibromyalgia
“’Maybe if I drank bleach,’ I think. I feel so dirty, tired and stiff. ‘Maybe if I turned inside-out and scrubbed my veins out with soap.’ Surely the disease would be eradicated. I’m supposed to find out today. I tap my foot. ‘Remember to breathe, you have to breathe, just breathe.’ Dr. Box settles into his rolling chair. ‘So she’ll always be sick?’ ‘Yes, but we caught it early.’ Yesterday, I dropped my hairbrush. I couldn’t finish. My hair is still knotted in the back. Last week, I passed out briefly, stepping out of the shower. And this was an improvement.”
‘What do I need to do to make it?’ I walked through those doors, standing at 315 pounds with a disability I hid. ‘Let’s give this a shot.’: Woman with Klippel Trenaunay Syndrome finds peace in chronic illness
“I was spending every day off work as a first responder on a recliner or in bed, surrounded by pain and fatigue. My disease was here to stay, after it had been silent for 12 years. I’ve always been hard-headed. ‘I will do it on my own.’ But when my health became something I could not hide anymore, I knew it was time to share it, despite the fear of what they may judge.”
‘I’m 14, alone with a boy. ‘What if you had sex with me?’ He leers. ‘No thanks.’ ‘What if I held you down and made you?’: Survivor advocates for fellow survivors of the Me Too Movement, ‘Culture tells us not to complain. To keep quiet.’
“I’m 17, and I have a long-distance boyfriend. He begs me for phone sex and I say no. ‘I’m sorry, I’m just not comfortable.’ I hang up on him, feeling guilty. He’s lonely in the Marine barracks. I’m all he has. He needs me. He suffers from depression, self-harm. A few nights later, I pause on the phone. I hear his heavy breathing, muffled moans. ‘Are you…?’ I ask. ‘Don’t stop. Keep talking,’ he pants. Feeling sick, I hang up the phone. I feel dirty and embarrassed. ‘Men will only go as far as you let them,’ I’ve been told. Boys will be boys.”
‘I thought, ‘How is THIS nothing to worry about?’ The walls were closing in. Everything turned black and I couldn’t move my body. ‘It’s common for college students to be under a lot of stress.’
“I decided to request one specific blood test; one that was much harder to receive than it should have been. I had to basically force my doctor to test me. One week later, I was finally given the answer I had been longing so badly for.”
‘He was 6 months old and only 9 pounds. I am a living nightmare. They knew it was all a tremendous f*ck up. They knew he was like this because of them.’
“I got the call around 3:30 a.m. I spent 9 months preparing for that call. 9 months worth of nights obsessively checking the volume on the phone, making sure it was charged, that it was close by, that I hadn’t somehow missed any calls. Well I got my call. Loud and clear.”
