“Life completely flip-flopped on me. I was so depressed and mad at my body, I began to self-harm out of frustration. It took me a while to see value in myself again.”
‘Tears falling, I limped to the school bathroom. ‘The bottom of your femur just broke off and is stuck underneath your kneecap.’: Young woman turned personal trainor shares journey with Hypermobile Ehlers-Danlos Syndrome
‘This isn’t living. It’s merely surviving.’ I was totally bed-bound. I was a shadow of the person I used to be.’: Woman with Chronic Fatigue Syndrome says ‘I appreciate every single second’
“The apartment above mine had a leak. My bedroom was full of black mold. They ‘cleaned’ it by painting over it. I gave up. 2 months later, I couldn’t get out of bed. I desperately searched for answers.”
‘What if they don’t believe me?’ The surgeons had NO answers. I was labeled a ‘hypochondriac.’: Ehlers-Danlos Syndrome warrior becomes advocate, ‘The frustration fueled a fire in me’
“I could’ve lost my life. I think of the doctor who laughed at me. ‘You’re healthy!’ he’d say. I wanted to give up more times than I can count. But I NEVER wanted someone to walk in my shoes.”
‘There’s ALWAYS something wrong.’ I’d sleep for 14 hours and still be exhausted. My body was clearly trying to tell me something.’: Woman battles chronic illnesses, ‘I changed my perspective’
“I was labeled a ‘hypochondriac.’ I’d get home and sleep without being able to do basic things like chores. ‘It’s all in your head!’ My worst fear was looking weak.”
‘Maybe I’m just weak.’ I carried a 1-liter bag with all my pills for the day. I felt so guilty for what happened to me.’: Woman battling invisible illnesses says, ‘It’s not who I am, it’s just part of me’
“For over a year, I had a headache that never went away. ‘You’re too young to be taking so many pills.’ I was in so much pain I wanted to die. I felt like a burden to those around me.”
‘How did I end up in a wheelchair from a bite? By my early 20’s, I was completely bedridden.’: Woman details ‘loss of faith’ while searching for Lyme disease diagnosis
“I didn’t leave my bedroom for 7 months or my house for 11 months. Once every two weeks I was carried from the bed to the bath to be washed and changed into Pjs, then back to bed. This was my routine for 7 months.”
‘Sit down, sit down!’ I fell, hitting my head on the concrete floor. It’s so hard to deal with and so scary.’: Young woman’s harrowing journey to Chronic Fatigue Syndrome diagnosis
“I’ve had random fainting spells since I had my very first period. I told the lady next to me, ‘I am going to pass out.’ I remember bending my knees, and then I was out. Doctors kept going back to my blood sugar, but I knew that wasn’t it. This is when all my issues began.”
‘I removed my breast implants. Within minutes, I was attacked by a man. ‘You look like a little boy. Where did your breasts go?’ It felt like a punch in my gut.’
“He proceeded to tell me that smaller chests were meant for middle school and that real women had ‘grown up’ bodies. Ouch.”
‘I was told to ‘Man up.’ Did they honestly think I was just a drug seeker? ‘I can’t keep feeding you with medication,’ my doctors said. ‘The pain will eventually just go away.’ Was I going mad?’
“It started when I was 17, during my last year in high school. One day it struck, and it hasn’t left since. I went dizzy, I felt sick, I was confused. My head was pounding like a freight train. I just wanted to be a normal teenager.”
‘I lied to you,’ my fiancé said. ‘It has all been a lie.’ I felt sick to my stomach. He told me there had been another incident with the woman from work. Turns out, that was the LEAST of my problems.’
“‘I don’t want to get involved in a relationship with you until she is out of the picture,’ I told him. I asked him outright, ‘Is there anything I should be worried about?’ He reassured me, ‘no.’ I could see there was something on his mind. Nothing prepared me for what followed.”
