“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.”
‘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.’
‘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.”
‘I knew something was very wrong but no one would listen to me. ‘You’re just depressed. Take some Zoloft and meditate. Everybody deals with pain. Take some Advil and suck it up.’
“‘She’s gonna need to open her eyes, sit up, and be able to answer my questions or we’re obligated to take her to the hospital,’ the other EMT chimes in, as if I have a choice in the matter. A group of my friends are standing right outside the door, praying for divine intervention.”
‘I’m sure it’s just stress.’ I heard these words from doctors who over 15 years couldn’t figure out what was wrong with me.’
“All of these doctors told me they didn’t know what was going on but I could take strong prescription meds to deal with the symptoms. I didn’t just want to deal with the symptoms. I wanted to know the cause!”
‘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.”
‘My friends invited me for a weekend getaway. I got a few itchy bites. ‘Are you pregnant?’ ‘Maybe it’s bacterial?’ This was a disease I had never heard of. There is NO cure for it.’
“I assumed it was the flu. I drank plenty of fluids and stayed in bed. But I wasn’t getting better. I had shooting pains all the way up my spine, as if someone was sawing me open. I went back to the doctor. ‘I think it’s food poisoning.’ ‘Maybe cancer.’ ‘HIV.’ ‘Is it possible you’re pregnant?’ No.”
‘It’s just cramps. All girls have cramps.’ ‘You went home from school for that?’ Doctors told me it was all in my head. I felt embarrassed and ashamed.’
“If this piercing pain that brought me to my knees in tears and sent me home from school was so normal for so many women, then how come I never saw other girls on the floor gasping for air? I couldn’t understand how this was normal.”
‘The doctors said, ‘Good luck. There is no cure.’ I didn’t think I was going to make it. My siblings were scared for me.’
“I felt so relieved when class was over. I’d quickly get in the car hoping no one would notice my mom still picked me, a 20 year-old adult, up from school. I was embarrassed and ashamed.”
‘By age 9, I had thoughts about my own funeral. I wondered who would attend. Mom would find my Barbie dolls with notes like, ‘I want to die.’ Not at all normal for a child to be saying.’
“I remember telling my parents, ‘I love my life.’ That would soon change.‘ I lost the majority of my friends due to bullying. ‘I couldn’t even kill myself. I’m a failure.’”
‘It’s a good thing you’re pretty because you don’t have much else going for you.’ Those words cut deep. I allowed them to affect how I viewed my worth.
“I was diagnosed with Lyme disease after I began college. I found unnatural amounts of hair coming out in my brush. I stood in front of the mirror in tears.”
