I was 18 years old and living in the American south. It was a new adventure after moving to the U.S just a few years prior. Being eighteen and still adjusting to a new culture, my life was a combination of amazing and incredibly stressful. It was a time before social media. The Internet was not a daily thing, a much simpler time in that regard. That lack of access came with its benefits but also left a lot of us lacking easy access to quality information.
About a year into my southern life, I began not feeling well. It wasn’t anything major a first, just some nausea and occasional vomiting. I had always kept a sensitive stomach so it was easy to categorize what I was experiencing as a temporary sickness. As the months went on, I became sicker. I could barely eat or keep food down. My nausea was overwhelming and quashed any desire for food. I began getting stomach pains and being extremely fatigued. At this point, I had seen a few doctors who couldn’t find anything wrong. They told me that it was probably a prolonged stomach bug and prescribed antibiotics and the B.A.R.T. diet for a month. I knew something was seriously wrong but they were the experts and I was young so I went along with their treatments. Eventually, I dropped so much weight that my gynecologist said he could feel my every organ through simple stomach palpating. I couldn’t keep up with my usual physical activities and felt the strain of being sick coming between my live-in partner and me. A few weeks later, I ended up in the local emergency room. Too weak to argue or even explain everything, they hooked me up to all the IVs, a catheter, and a heart monitor. I was admitted for malnutrition, dehydration, and vomiting.
While I was in the hospital they did a few test I hadn’t gone through, including an endoscopy and a gastric emptying test. These proved vital to my diagnosis. I had multiple bezoars (a ball of undigested fiber) removed from my stomach as well as finding out that my stomach was not squeezing and was emptying very slowly. This finally led to the diagnosis of gastroparesis (a partially or fully paralyzed stomach).
At first I felt relieved that I was not crazy! There was something actually wrong with my physiology. Unfortunately, in the same breath that the doctor shared his diagnosis, he said that I was anorexic. I was young, still quite weak, and overly passive with authority figures so I didn’t put up a rebuttal. I knew that I wasn’t anorexic and he had just told me that my stomach was to blame for my nausea so I lay in utter confusion as my ever fading partner and my mother, who had just flown in, took his comment as fact.
I left the hospital and moved back to my parents’ home to recover. My relationship fizzled out between the distance and illness. I saw a big city doctor who confirmed the gastroparesis diagnosis but there wasn’t much follow-up. My mom bought books about having an anorexic child and sent me to an eating disorder therapist. It didn’t matter that I was diagnosed with a busted stomach or that I pleaded my desire for food day in and day out. I had been labeled ANOREXIC. That carried a weight and assumptions that I could not shake.
During that early stage in my disease, I continued to have some flares but I was mainly okay. I had lessened my stress, gained weight, and even moved out on my own again. I truly put the condition out of my mind and it only popped up when I was over extending myself or eating poorly. Even then, it wasn’t that bad and I just lived with this overhanging possibility that maybe it was anorexia that I had and that I didn’t know myself well enough.
A few years later, I was living out of the country when I got sick. I thought it was a stomach flu but it wouldn’t go away. I came back to my parent’s home and went to visit a new gastroenterologist. This time it was a woman and she had actual experience treating gastroparesis patients. I was flaring for two reasons, my condition had gotten worse as I aged and I had been eating the antithesis of the correct diet. She told me that I was not anorexic nor had I been anorexic. Not being able to eat and losing interest in food because of nausea is a part of my disease. I was put on a special diet and given medication. That treatment combination and her words were a revelation.
I felt vindicated but sad. I went home and told my family what she had said. I showed them literature describing the disease and how important my diet would be for management. They were supportive but it took many additional years for my mother to actually believe that I didn’t have an eating disorder. After all, I was a girl and she couldn’t see my disease. No one talked about it so it probably wasn’t real. To her, it must all be a mental issue.
Now, my condition has worsened. While I am careful with my limited diet (no fiber, low fat, no red meat) my stomach seems to have given up almost completely. I’ve had different treatments, medications, and experimental procedures but eventually, I may have to use a tube to get nutrients whilst bypassing my stomach.
I hope not. I hope there is a treatment in the future that helps those of us suffering from this condition. I have to wonder, all those years of thinking this sickness was in my head, of trying to explain why I wasn’t eating, of seeing doctors who didn’t comprehend or believe me, would I be further along on my path to understanding my body and its new normal? Would I have been listened to if I were a man? Why would no one stand up for me and my truth? Why are people so quick to believe a doctor’s first opinion when it comes to young women? Why does society assume that girls are lying and that women don’t know their bodies?