The Wonderland of Chronic Illness

The surreal world of sickness from a child's perspective

August,1975: "Mommy, can I wear my new dress?" I ask, excitedly anticipating my second day of first grade. It's my favorite dress with a pinafore and a bow that ties around my waist in the back. I'm allowed to wear it, and I feel so proud as I walk into my first class that morning. Everything is so new--I love the smell of the crayons and the feel of glue as I cut and paste pictures into collages.

Until suddenly I am overcome by the most excruciating, twisting pain in my abdomen. I double over in my chair and the bow around my waist feels constricting. I notice how hot it is in the room. My friend looks up from her work and asks whether I'm okay. When the wave of cramping finally eases, I get up from my seat and tell my teacher I don't feel well. She sends me to the principal's office where the secretary takes my temperature; the reading is normal.


Down the Rabbit Hole

Though I did not know it at the time, I had fallen down the rabbit hole into the "Wonderland of Chronic Illness." I took a sip from the "Drink me" bottle and found myself growing up fast. I had to, in order to survive in this strange land where people in white coats communicated in the unfamiliar language of Gibberish; where foods labeled "Eat me" had the power to harm me; and where the Queen of Hearts insisted that what I was feeling was "all in my head."

As a child I didn't know how to express that the pain I felt was real--I wasn't making things up, nor was it psychological. It became clear to me that grownups don't listen to children or validate what they're feeling; therefore, it was easy for my parents to attribute my pain to school phobia. This was understandable, given the fact that my cramps and vomiting often occurred at suspiciously convenient times, such as before school or shortly after my arrival there. During second grade I had a teacher who--at six feet tall--towered over me, with a booming voice and a temper to match. I was afraid of her; however, not to the point that I would become physically ill, as my well-meaning parents thought.

One particular incident that remains etched in my mind:

Fall, 1976: Mrs. K. calls me out into the hall. "Caryn, what's your favorite candy bar?" "A Hershey bar," I reply. "If you promise not to throw up in class anymore, I'll give you a Hershey bar at the end of the year."

I was confused. I wasn't making myself vomit, I had no control over it. Couldn't she understand that? Despite my promise, I continued to vomit and never received that Hershey bar. This conversation implied that I was responsible for whatever was wrong inside of my body and through sheer will I could make it stop. It was the first time I was blamed for being sick--and it wasn't to be the last.


Eat Me

Pain and nausea (and occasional vomiting and fever) became my constant companions. Feeling well became alien: I thought the whole world suffered from stomach aches after ingesting meals, and this notion seemed to be supported by all the TV commercials for antacids and Pepto-Bismol. At my yearly physical, my mother told my pediatrician, "Dr. Rabbit," about my cramping and how I rolled around on the floor after eating. His answer: "It's the way she digests her food." Based on his recommendation, I stopped consuming dairy foods, but my abdominal symptoms intensified. I began to take Digel, and later Gas X, for the pain and cramping. Pretty soon I stopped eating certain foods, such as fresh fruit, in order to avoid symptoms. I was dubbed a picky eater.


I Grew Very Small

It wasn't long before I developed other symptoms that, for the moment, overshadowed my eating habits. I spent the day of my tenth birthday in the hospital because I was severely anemic and had been running a continuous low-grade fever for weeks. I endured many tests for various diseases including leukemia, juvenile rheumatoid arthritis, Rocky Mountain Spotted Fever, Lyme disease--all of which came back negative. My doctors were puzzled.

I tried in vain to provide the missing link and said, "My stomach hurts." Like the White Rabbit who was preoccupied with the time, the doctors were so preoccupied with lab results and X-rays that they failed to listen to me. I could feel myself growing very small in my hospital bed. I had become invisible.

Four more years passed and down, down, down, I fell. I seldom outgrew my clothing or shoe size. Friends laughed when they discovered I still wore Healthtex children's clothing. Weakened by fevers, vomiting, and diarrhea, I thought I had the flu even though it would last for two weeks and come back again.

After one strenuous bout with "the flu," I attended a wedding shower thrown for my cousin. Her friend who sat across from me was a psychologist and noted how I picked at my food and ate very little. She informed my cousin that she believed I had anorexia nervosa. My mother was skeptical, but decided to approach me about it anyway, asking whether I was making myself throw up. I told her no, that I was terrified of throwing up--why would I induce it?

Next Page »