Rewriting My Narrative

I wish I could apologize to the girl in the photos above. I wish I could tell her that she’s not crazy, that despite what doctors told her, despite the narrative she told herself, she was not broken…if anything, she was strong. I would tell her that it wasn’t her fault that she went from the young woman in the first photo—a vibrant, energetic, bubbly, fearless twenty-one year old with a wild mane of hair and a wild personality—to a skeletal shadow of her former self, barely eating, skin and bones, a year later. This isn’t a pity party, though. I’m relieved and processing things that I’ve believed about myself for decades—I’m attempting to rewrite my narrative.

At twenty-three years old my doctor insisted that my pain and inability to eat all but the plainest food was sparked by trauma. He pressed a business card into my palm—his wife was a social worker specializing in eating disorders. He urged me to call her. He assured me that she could help me. According to him, my issues resided in my head, more than my gut. I held onto that card for quite a while, periodically slipping it from my wallet and staring at the number before sliding it back in behind my bank card.

I finally called weeks—or maybe it was months—later. Yes, I was assaulted at twenty years old, but it was over a year and a half later that I started starving myself, or at least severely restricting what I ate. At twenty-one my favorite drink was a Kahlua and cream—heavy on the cream; my favorite meal was pizza; my favorite snack, Smart Food; and my favorite dessert, the Toll House chocolate chip cookies my roommates and I would whip up in our kitchen. But by spring of my junior year those foods started leaving me in intense pain, like someone was knifing me under my right rib.

While my friends were lying on the beach in Jamaica during spring break, I was in the hotel room for part of the day recovering from the jerk patties I had eaten (and the alcohol I downed the night before didn’t help). But, I kept eating and ignoring the discomfort through a summer of traveling all over the country for my internship with a magazine. Room service in a fancy hotel, Tex Mex restaurants, pub food—I ate everything. But, I was sick of feeling sick and little by little as fall slid into winter, I cut out everything that left me in pain.

I was especially careful if I was heading out for the night, either with my boyfriend or my roommates. I wanted to enjoy myself and not ruin a good time out doubled over. By the end of first semester senior year I whittled my diet down to just a few things…an English muffin with jelly or a dab of margarine for breakfast, a corn muffin and fruit or a plain baked potato for lunch, and a bowl of soup or pasta with vegetables for dinner. Sure, that sounds healthier, but I continued going to the gym every day and was very active. I burned up everything I ate and then some. The pounds melted away—at least fifteen of them.

A couple of years later, when I still hadn’t gained back the weight and lost more—the scale reading seventy-nine pounds at my lowest—the narrative I told myself was that I had an eating disorder sparked by a delayed reaction to a “traumatic experience in college.” That was when I finally called the therapist. I even convinced myself that it was because my friend was murdered the winter of my senior year. I remember that it felt like an epiphany realizing that I saw her face flash across the news while I ate a bowl of soup on my couch and couldn’t stomach the rest. Looking back now, though that was incredibly traumatic, my appetite had plummeted at least a few months before.

My boyfriend at the time tried to get me to eat—he took me out for “burger night,” so I’d eat something other than the dry turkey subs, I preferred, and said if I gained weight we’d get engaged. My family begged me to eat whenever I visited them on Long Island. My mom, fearing for my health urged me to move home from Boston. In Hungry, an essay I penned a decade ago, I wrote about how parenting a child with a similar “eating disorder,” felt like karma. I felt awful putting those who loved me through the ringer watching me starve myself. It was actually painful rereading Hungry just now—seeing how I blamed myself. But, I know now it wasn’t my fault…

I landed in the ER in late October 2023 due to severe right side chest pain radiating to my back and shoulder—I was a month post-covid, and my doctor thought that it could be a pulmonary embolism. I thought it was pleurisy, which I had after one of the times I had covid (I’ve had it too many times). I was going to just ride it out, but she insisted I go to the emergency room (as did the urgent care doctor, where I headed first, hoping to avoid the hospital). My son overheard the conversation with my doctor and finally convinced me to listen. When the ER doctor pressed under my right rib, I nearly flew off the table. “It’s not a PE,” he declared. “It’s your gallbladder.”

I informed him that I’ve had that pain forever, and multiple tests over decades have come up normal. The only explanation I’ve ever been given—other than it being in my head—was costochondritis, a painful rib cartilage inflammation. He shook his head (whether in disagreement or disbelief, I couldn’t be sure) and told me that I’d need a gallbladder ultrasound. I got an alert that the results were in the portal before the doctor even returned to my bedside.

I’m not going to lie, I was terrified that it was gallbladder cancer—the pain had gotten markedly worse over the last few years, and I was worried that it had been growing and festering during that time, especially since I have a strong family history of cancer. A huge wave of relief washed over me when I saw the normal report. When the doctor returned to my bedside, before he could even utter a word, I said, “I saw the ultrasound was normal, so it’s just costochondritis, right?”

I suppose my jumping in with my own assessment was quite annoying, since he seemed a bit miffed. “I’m sure it’s your gallbladder,” he insisted. “It’s dysfunctional, which doesn’t show up on ultrasounds. We’ll admit you and put you in a room. You can have the test for it in the morning and your gallbladder out in the afternoon. Or you can see your own doctor.”

I immediately chose the latter. I did see my doctor the following week—he agreed with the ER doctor’s assessment and ordered a HIDA scan, which checks the gallbladder’s ejection fraction. It took me four months to have the test done…and I almost canceled it a few days before. There were various reasons for the wait—none substantial… Other things took priority; I was a bit a nervous about the nuclear medicine aspect; I was too busy; and on and on. The irony isn’t lost on me that someone finally took the pain seriously, and I didn’t follow through. But, I finally did it and the results were on the portal before the end of the day. I have a hyperkinetic gallbladder (also referred to as biliary hyperkinesia).

The normal gallbladder ejection fraction is 35% – 80%. Mine is 97%. My gallbladder contracts and empties more quickly, leaving me with what Dr. Google refers to as “a steady gripping or gnawing pain in the upper right abdomen near the rib cage, which can be severe and can radiate to the upper back.” My doctor hasn’t called me to explain the condition, so that’s why I was left to consult Dr. Google (my term for Googling medical information, which is not always the smartest thing so to do).  

Eating fat makes the pain much worse, and the only known treatment is to remove the gallbladder. But since it’s a rare condition (or at least it’s a new condition—there very well may be more people with it than it seems), there isn’t much research on this. Since I have a bleeding disorder—Factor XI/hemophilia C—surgery can be risky for me, even as mundane a surgery as gallbladder removal. I would need an infusion of frozen fresh plasma, which can have side effects (this is why I couldn’t have had surgery when I was in the hospital, even if I wanted to—FFP needs to be ordered in advance). But, and this is a big BUT, I know that I’m very lucky—this isn’t life-threatening, like gall bladder cancer would be (and since I’m superstitious…knock on wood and kinehora*). And it’s not the worst thing to not be able to eat more than a bit of fat—I don’t love drinking skim milk (instead of my former 2%), skipping chips with my tuna sandwich and replacing gooey, delicious pizza cheese with low-fat shredded mozzarella, but it is healthier, and I feel better. I haven’t had my beloved Reese’s Peanut Butter Cups since the night before my ER visit in October. The food I indulged in during a trip to the Hamptons in the two days preceding my ER visit—pizza for dinner twice and that chopped up Reese’s Peanut Butter Cup over vanilla ice cream for dessert—sparked the extreme pain, as I usually eat fairly low fat most of the time.  

I’m (again) relieved to know that I wasn’t crazy, much like when I was diagnosed with hypermobile Ehlers Danlos Syndrome after having symptoms for decades (you can read about that here). And I’m fairly certain that this condition is caused my hEDS. And there’s a deeper relief in knowing that the damage I’ve done to others (and myself) was out of my hands. I’ve often blamed my son’s ARFID (Avoidant Restrictive Food Intake Disorder) on the example I set with my limited diet. It didn’t help that my husband has suggested just that subtly—and not so subtly—over the years. But, while my genetics may have caused my son’s issues (people with hEDS are far more likely to have disordered eating), his therapist has assured me that I did not. And now that I know my eating issues are not my fault, I can forgive myself a bit.

This is the third time I’ve found out years later that something I blamed myself for was actually out of my control. The first time was when I was diagnosed in 2019 with the bleeding disorder I mentioned above—I had never really forgiven myself for fainting and allowing my son to roll out of my arms onto the hard hospital floor when he was a day old (you can read about that here). But knowing that my post-birth complications and the severe (undiagnosed) anemia I had going into birth due to hemophilia C/Factor XI were the reason for that horrendous moment healed me (even if it’s still a painful memory).

I am hopeful that the medical gaslighting women have routinely endured is becoming a thing of the past. Most of my doctors now treat the whole person, listen and take problems seriously. But, there are still those doctors who brush things aside. My ninety year old mom recently experienced this. When this happens, women need to speak up and stop letting doctors dismiss our concerns. (I say women, because it has seemed for decades that doctors are quicker to assume a problem is all in a woman’s head, but men are taken seriously.) When something feels wrong, we need to say, “Can you look into that further?” and not accept that it is all in our heads. And while stress and anxiety can exacerbate a lot of ailments, it is too easily still offered up as an answer by some doctors, as a way to brush us aside. I’m sharing all of this (or perhaps over-sharing—I’ll take that risk), because I want other people to have not only hope, but this feeling of validation, for which I’m so grateful.

*Kinehora: The Yiddish version of “knock on wood.” It is said to ward off the evil eye, if you say something good.