“I was sobbing in bed one night angry at God. ‘Why won’t you take the pain away?!’ I had worked so hard despite being unwell, pushing myself to achieve. I got the grades to study music, my true passion, but was too unwell to go! I was gutted. The emergency doctor uttered the word ‘stroke.’ I was in disbelief. I was only 19 years old.”
‘What’s that? It could be something sinister. You might have a tumor.’ I got fired for being ill.’: Young woman diagnosed with Ehlers Danlos Syndrome after countless tests, ‘I was getting sicker and sicker, but with no answers’
‘Two months before college graduation, my symptoms returned. The bloat, the blood, stomach pain, and fatigue.’: Young woman diagnosed with severe Ulcerative Colitis, ‘I felt I would never get my life back, now I embrace it all’
“‘Natalie. He died.’ I can still remember it like yesterday. Being woken up in my freshman year dorm from a call. All I remember next is screaming, ‘No, no, no, no, no!’ Dead. Died. Gone. As time went on, I started feeling sick. Very sick.”
‘Call 911!’ My baby was twitching. I held his limp body. I heard sirens. They were coming for MY child.’: Boy suffering from Childhood Epilepsy undergoes brain surgery, ‘he is now happy and living with half a brain’
“We were getting ready for a nice picnic at the park. Suddenly, the right side of his body went stiff. His oxygen dropped. First firefighters, then paramedics. Our house was full of first responders. ‘Why is nothing working?!’ I wanted to wake up from this nightmare. I wanted him to live. I held my breath.”
‘My eyes! Something is wrong with my eyes!’ He throws down his backpack, screams, and slumps onto the bench.’: Mom to son with Type 1 Diabetes claims ‘no one can prepare you for this’
“‘What’s wrong?’ My heart drops. ‘I can’t see anything anymore!’ I feel sick, but tell myself I have to stay focused and calm for my son because he is neither of those things. He’s now stomping around the house, pounding on the table. It all happened so fast. From fine to not in just a few minutes.”
‘This is the mask of a Type 1 Diabetic caregiver. You’ll find us at 3 a.m. just trying to keep our child alive.’: Mom to son with Type 1 Diabetes claims ‘we are the strongest mothers you will ever meet’
“We are supported to teach our kids to dream. But their dream is a cure. Firefighter, pilot. ‘Too risky,’ we tell them. The anxiety of death is real. Instead, we train them to get a job with ‘good benefits,’ a conversation no parent should be having with an 11 year old. You’ll find us at 3 a.m., wide awake, just trying to keep our child alive.”
‘My left shoulder dislocated talking to my mom. She was mortified. ‘AHAA!,’ he said.’: Young woman recalls ‘party tricks’ as joints dislocate after Ehlers-Danlos Syndrome diagnosis
“I woke up with a sore knee. We ignored it… until the pain became unbearable and was spreading. It all happened so fast. I was too overwhelmed to be scared. However, I was confused. We all were. The tricks I used to gross my friends out ended up being a piece of the puzzle. Hyper mobility, one of the most obvious symptoms of EDS.”
‘Really? Can I? I’ll be there at 2:30 a.m.’ He seemed surprised. He didn’t expect me to say yes.’: Young woman moves in with man she found on Facebook after chance encounter in McDonald’s, ‘I found a love I never knew existed’
“When I first met him, I was cleaning tables at McDonald’s. He was so sexy and had the most beautiful blue eyes I’d ever seen. And he just HAD to hold them on mine. We parted ways, but later I found him on social media. I essentially moved in that first night.”
‘I felt itching on my stomach, noticed a small black spec. I became panicked. My boss looked at me. ‘That’s a tick!’: Young woman encourages others battling invisible illness to ‘never stop fighting’
“I remember riding the train and I felt like a stranger was living in my body. I didn’t feel like myself… I felt like my world was constantly spinning, I was beyond exhausted, no matter how much I slept, and I often found myself wearing sunglasses because the light bothered me so much. Before this, I didn’t even own a pair. I got a call from the Urgent Care. ‘You tested positive for Lyme Disease. You need to come get you an antibiotic.’”
‘If things don’t improve, we will let you go. They get a choice whether to believe me. My illness isn’t visible.’: Woman describes being ‘dehumanized’ after being fired for being disabled
“When they pick my performance to pieces and criticize my every move, I then have to deal with being humiliated and adding another layer of my ‘not being good enough’ complex to the myriad of problems I already have to face on a daily basis.”
‘I’m often mistaken for being lazy or spoiled. The dirty looks I get would shock you. I may look like a typical 23-year-old, but I’m not.’: Woman with multiple ‘invisible’ chronic illnesses refuses to let struggles ‘overcome her joy’
“My determination isn’t disabled, my fire isn’t disabled, but my body is. For a long time, this was hard to admit. I do my best to show up every day, but it’s not always enough. I can practically smell the resentment from my coworkers. My boss stopped believing me and asked for a ‘doctor’s note.’ Instead, I ended up hospitalized. ‘Is this good enough?’ I snarkily asked. I know I should keep my mouth shut, but I really can’t help myself. The struggle is REAL.”
