“I was standing in the kitchen alone. My phone rang. Assuming it was my husband, I answered. But it wasn’t my husband. All I could do was freeze. I was in shock. I hadn’t processed his words until I heard the ‘click.’ My body shook as I collapsed.”
‘She’s just a nervous child.’ The words still burn. I was 13, about to start high school. But I was different. My life was consumed with excruciating pain, diarrhea, and the toilet.’
‘You’re too young. You’re making this up. It’s all in your head.’ She tortured me through the test, insisting I was fat and overweight, and THAT’S why I was having pain. I was done.’
“I was going through customs when I got pulled into secondary screening. I didn’t know why. I sat in a locked concrete room and was told all my wrong-doings and mistakes and what my options for consequences were. I had to leave the country.”
‘I was at work when I got the call from my doctor. Time stopped moving. The only part I remember is him telling me there are no known cures. I was literally watching myself decay.’
“I was terrified my boyfriend would leave me because it made me look different, or because it was just too much for him. I felt him distancing himself from me out of fear; he kept telling me how scared he was for me, and how he didn’t understand how this could have happened to me so quickly.”
‘They can’t do anything else? That’s the only option?,’ people asked me shocked, wide eyes. Making the decision to saw off a part of my body wasn’t something I planned on.’
“I took a bad tumble off a horse when I was a kid. My greatest fear was that I’d awaken from anesthesia – and realize with sinking certainty I had made a horrible, irreversible mistake.”
‘Less than 10 seconds changed everything. I was unable to get up, despite how hard I tried. Shock settled in. I overheard the words of some hospital tech, ‘SHATTERED!’ What did that mean?’
“I am not a fan of public restrooms but knew I would be on the road. That ‘smart’ decision changed my life forever.”
Young people are treated as if their health issues can’t possibly be chronic.
“What will happen to my health in the years to come? Will my condition gradually worsen? Will I become more and more restricted in my activities? Will I be able to support myself? Will I be able to live independently or will I become increasingly dependent on my family?”
The Challenges of Living with Invisible Pain or Illness
“I’ve learned that the burden is on those who are chronically ill to make the invisible visible to others.”
Mom says she’s had an epidural needle stuck in her spine for 14 years: ‘It’s devastating. It’s absolutely wrong’
“I’ve never seen a piece of needle that’s broken off and left in someone’s spine. Never seen it. Never heard of it. It’s outrageous,” her attorney said.
