The roots of this "mystery illness" took hold when I was fifteen, but it didn't become official until I was nearly twenty-seven. It started quietly, lingering in the background of my life, right up until the day my reality quietly began to fracture—but we’ll get to that.
As a kid, my emotions and my digestion were completely wired together. If I got too worked up, my stomach would churn. I’d try to distract myself, sitting silently with my arms wrapped tightly around my middle, but inevitably I’d feel weak and dizzy, forced to sprint to the bathroom to purge the anxiety from my system. My Grammy called it a “nervous stomach.” The family accepted the label, smiling knowingly when I clutched my belly and rushed off. That might have been the genesis of my disease, though I’ll never know for sure. I was told a "nervous tummy" ran in the family, so no one ever thought to consult a doctor, and I simply never asked. It only happened now and then, anyway. I just accepted it as one of those weird genetic quirks.
When I turned fifteen, the occasional discomfort morphed into a daily nightmare. I’d lose my appetite for days, gagging at the mere thought of food. On the rare occasions I forced myself to eat, I’d violently throw it all back up almost immediately. I also dealt with brutal bouts of diarrhea that left me feeling utterly wretched, interspersed with oddly short periods of constipation. God, I honestly miss the constipation. It was uncomfortable, sure, but at least I was functional. At least I wasn't being hollowed out by non-stop spasms tearing through my digestive tract.
I was dropping weight at an alarming rate, but I was terrified to see a doctor. When I was fourteen, I’d gone to our family physician for help with agonizingly heavy periods, and the experience was a nightmare. Without my asking, he prescribed birth control, then immediately launched into a cruel, unhinged sermon about how I was a sinner and the pills would corrupt me. He was an extreme Catholic fundamentalist. I later found out he gave those same lectures to forty-year-old women. I couldn't understand his fury; I hadn't asked for the pills, I just wanted my cramps to stop. Thankfully, his extreme behavior eventually ran him out of town.
But still, I was fading. My friend Jen practically begged me to go back to a doctor. I was dizzy, fainting, and drowning in clothes I used to fill out—and I’d never been particularly curvy to begin with.
I walked into the new office bracing for another religious lecture on the moral failings making me throw up. I didn't get religion from this new doctor, but I got a heavy dose of dangerous pop psychology. Looking at my frail, sickly frame, he declared that I was anorexic. No testing, just a knee-jerk conclusion.
That was news to me. At the time, I thought anorexia was a conscious pursuit of thinness—a dysmorphic obsession where you starved yourself to reach a goal weight. I thought the textbooks had it all figured out. But I didn't feel anorexic. I felt ravenously hungry and terrified that my body was failing me. Was I anorexic on the inside, in some invisible way?
No. I knew my body. Something was physically broken. But it was 1991, I was a teenager, and the medical establishment’s default setting for any thin, sick kid was anorexia or bulimia. Oprah said so. Donahue said so. Who was I to argue? I was no expert—just a sick, scared kid who had already been failed by nearly every adult I'd ever known.
So, Dr. O.B.'s "treatment" was a vile vitamin serum called Maltivol 12. It was a multivitamin sludge suspended in a thick, syrupy sherry base. I gagged at every dose. Even now, the mere smell of sherry makes my mouth water with nausea. I despised it, but I choked down two tablespoons, three times a day, for three months. I kept glasses of cola and water nearby to wash it down, but I still gagged.
It did absolutely nothing. It didn't boost my energy, spark my appetite, or help me gain weight. If anything, the syrup made me so nauseous I couldn't eat for hours afterward, and it made the diarrhea so much worse.
I kept losing weight. I kept getting sick. I was still scared, but I was beginning to accept a grim reality: if I wanted to survive, I had to save myself, because the doctors sure as heck didn't believe me.
Then, after about eight months of sheer hell, it just stopped. One day, everything I consumed made me violently ill; the next day, I was fine. I didn't know what had happened, and I didn't question it. My teenage philosophy was to just survive the day, and I fully intended to do exactly that.
Years passed. There wasn't another sign of the bizarre malady that had hijacked my teens. Two babies came and went, and my gut remained remarkably quiet. I still got a "nervous stomach" when stressed, but the insane weight loss and uncontrollable vomiting were gone. I was still skinny, but my whole family was, so that was the only unsurprising thing.
I was often tired and had a few dizzy spells a week, but I easily chalked it up to my anemia. I’d been diagnosed with it as a child and told I would suffer from it for life. Diet and supplements were supposed to manage it. Back then, they worked. Back then, a lot of things helped when I felt sick.
My third daughter was born in 1996. I began having small issues with diarrhea during the pregnancy, but I didn't think much of it. Her father noticed, though, and told me to get checked out. I mentioned it to my doctor, and she brushed it off, saying that stuff happens with pregnancy. I felt a flash of apprehension in that moment, but I shoved it aside. *She's probably right,* I told myself. *It's been years.*
After the baby was born, it didn't go away. It escalated. Sean was progressively frustrated with me, but I assured him I had told the doctor and she said it was normal. He seemed dubious but stepped back for a bit. When it kept going on, he snapped at me once to just make the doctor listen. *Oh, sweetheart,* I thought. *If only it were so easy.*
By then, I just thought they believed I was a stone-cold liar. Pretty much anything I brought up was dismissed with, "When was your last period?" or "Which birth control are you on?" Eventually, it became, "Let's try an antidepressant." Both of those options became repeat Band-Aids from that doctor, and the next one I went to, praying he could—or would—help. He "fixed" me with a cycling loop of different antidepressants, anti-anxiety meds, and birth control prescriptions, sometimes layered for better effect. I couldn't sleep, eat, or think. I either cried constantly or felt nothing at all for weeks. I had horrible migraines, still no weight gain, and still no fix for the now-constant diarrhea.
Then came the callback after a pap smear: cervical dysplasia. I needed a LEEP procedure to burn off the precancerous cells. Routine stuff. I went in, had it done, and thought nothing of it. It was fine.
And then it wasn't.
One morning, I got up to pee. On my way back to bed, a sudden, agonizing pain shot through my bladder. It was like nothing I'd ever felt. I felt a physical *pop*, my knees went weak, and I dropped to the floor. Sparks danced in my vision, and my blood ran cold. Dragging myself up, I ran back to the bathroom because I suddenly needed to pee again, desperately. I sat, felt the release, and then another sharp, burning *pop*.
I peed out a chunk. *Was it a stone?* I knew people passed them that way. But when I looked in the toilet, it wasn't a stone. It was a small, bright orange pebble of carrot.
You're not supposed to pee carrots, are you? I mean...
I called the GYN as soon as the office opened. He booked me for an ultrasound, but it took almost a week to get it done. When the callback finally came, he needed to see me immediately.
I went in a few days later. He sat quietly at his desk and gestured for me to sit. By now, I was in full panic mode, sweating through my clothes, feeling like my life was flashing before my eyes.
Soberly, he said, "There was something on your scans. I need to refer you because this is not my field."
Shaking, I asked, "What is it?"
"It looks like Crohn's Disease," he said. "But I am not qualified to make an official diagnosis. You'll need to have your family doctor make the referral. I am so sorry."
I kid you not: relief washed over me, and I started to laugh.
He looked concerned and confused. "Are you okay?"
"Oh, that's it?" I said, still laughing. "That's all it is? I was scared it was something much worse."
I thanked him and went home to call my doctor. What Dr. L didn't know is that I'd already been reading pamphlets at the drugstore and searching my symptoms at the library. Let me tell you, for the diseases that share these symptoms, I was incredibly lucky to have gotten off with "only" Crohn's.
By this point, I was twenty-six, almost twenty-seven. And the worst was yet to come.