“I started to see bald patches on the back of my head. My legs and arms would ache so badly I felt like I would vomit. I lay on the couch, wondering why my body hated me so much. Every day, I woke up with one more symptom, one more medical bill.”
‘There’s nothing else we can do.’ I lost my hair in handfuls at a time. It was hard to look in the mirror. I didn’t see the point in living.’: Chronic illness warrior says ‘I’ll never take life for granted’
‘You just picked up a virus.’ I was dizzy every second of the day and felt excruciating pain. Why wasn’t this going away?’: Woman advocates for Chronic Lyme Disease, ‘We’re in this together’
“I felt a pit in my stomach. Then the pain started, a sharp pain right above my belly button that wouldn’t go away. I was collapsing every time I got out of bed. I’d drink a ton of water, eat enough, and was still feeling ill.”
‘My face shriveled up. I looked like I aged 50 years in a matter of minutes. Nobody understood the pain I was in’: Man diagnosed with Lyme disease, ‘There’s nothing you can’t accomplish’
“Every winter, I would get a sinus infection and be put on antibiotics. I had no idea what I was putting into my body was fueling my sickness. The pain was so bad. All hope was gone.”
‘Everything went black. ‘Did I pass out?’ I woke up with no memory. They had no idea what was happening to me.’: Woman describes struggles with Lyme Disease, ‘Every day is a gift’
“The stairs became my ‘Mount Everest.’ I lost consciousness 18 times. I woke up in the ER with an IV in my hand. The doctors found nothing wrong with me. We were grasping at straws.”
‘It’s like being stung by a thousand bees.’ No one knew why I was in pain. And no one knew why the pain was spreading.’: Woman describes journey with Lyme disease, ‘It made me who I am’
“Even a feather-light touch could send me screaming in agony. It felt like I was being stabbed in my spine, over and over again. At a time when I could’ve really used a hug… I couldn’t receive one.”
‘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.’”
‘Please Mom, I don’t want to leave. I promise I’ll be good. I don’t like myself very much.’: Sister’s heartbreaking tribute to her late big brother who society deemed ‘the bad kid’
“I’d watched life treat my brother Glen so unfairly. I wanted so badly for something to go right for him. One night, he was extremely upset. My father picked my mom and I up. Glen called us to see where we were, and I still remember her last words to him. ‘We’re giving you space for the night, but we want to help you, Glen.’ The next morning, we were greeted by my dog at the front door. She was crying.”
‘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.”
‘Do you understand what I am saying?’ she asked. I stared at her, trying to process. My oldest son, at 15 years old, fell suddenly ill. It began as a terrible rash on his arms and legs.’
“In the middle of those sleepless nights of waiting, worry, and prayer, I became increasingly curious about my family history. Little did I know the role it would play in my life when my son finally received a diagnosis.”
‘I wondered why my doctor had such a grave tone when she gave me the diagnosis. This sounded like no big deal at all. There was finally a name for this mysterious illness! Boy was I wrong.’
“When I was riding the subway, I started to feel a little dizzy. I physically could not move. When the doors finally slid open, I spilled onto the platform packed with hundreds of commuters. My breathing and vision slowly returned. I finally realized this was serious. It had to be my priority.”
