The thing no one told me when it was first determined that I needed to gain weight was that there is a big difference between weight gain and weight restoration. Trying to regain weight in a malnourished body is much different than, say, a wrestler with a healthy body trying to bulk up. I'm not going to go too much into the medical details because they're boring and you didn't come here to read a medical journal, but here's the summary as I understand it: Because I had been at a fairly low weight to begin with, it didn't take much for my body to go into starvation mode. This meant my metabolism slowed way down in order to compensate for the energy deficit. Once I started increasing my calories in an attempt to gain weight, my metabolism went into overdrive. An energy calculator my mom and I found on the internet said I was burning X number of calories per day, so logically if I was eating more than that I should be gaining weight. In reality, eating more made my body burn calories faster. Everyday tasks like walking to class or going to the grocery store can cost an exponentially higher amount of energy for someone who's in starvation mode than in a healthy body. So walking around campus, pushing one of my friends in a wheelchair, spending four hours a week contorting my body into unnatural poses in my theater movement class, all were incredibly taxing on my body. As I continued to eat, my metabolism continued to overcompensate. Later, I'd learn that the general recommendation for weight restoration was almost double the calorie amount my mom and I had settled on in our research. Additionally, the changes that my body had gone through during Lent meant I wasn't able to eat as much as I used to. My stomach had literally shrunk, so a small portion could leave me feeling stuffed and believing I had eaten a normal amount, and my digestive system had slowed down, so I rarely felt hunger.
All of this meant that instead of gaining weight, I was continuing to lose it. I was starting to notice some of the side effects of malnourishment; I was cold all the time, my hair started falling out, but I wouldn't have known to attribute these to being malnourished. After all, I would go spend hours at the dining hall trying to eat my money's worth of food, or happily eat the campus center's ginormous 99 cent ice cream cones in their entirety. All this to say, I knew my weight was a concern, but it was always something that was just at the back of my mind: if I kept eating, I'd get better. So, in October of 2021 when my world suddenly began to come crashing down, it was a total shock.
Ashley and I had plane tickets booked to come home to Colorado for Halloween. I was looking forward to a weekend of baking, pumpkin carving, and copious amounts of candy, so you can imagine my disappointment when I found out that the first activity on the agenda was a trip to the doctor. My parents were worried that I was still underweight, and they wanted me to go and get some lab work done just to make sure everything was normal.
The doctor recommended I start seeing a dietitian to help with the weight gain. USC has a health center on campus, so it seemed logical for me to look for a dietitian there. The next week, I was back at school and had a telehealth appointment with one of the campus R.D.'s. I was nervous, but hopeful that she'd be able to offer some help.
Instead, she was fifteen minutes late to the meeting, joined the call and said she "knew why I was there" without listening to any of my story, and then asked me to recall everything I had eaten over the last several days. Her only recommendations were to eat less snack foods and to drink three Boost or Ensure nutrition supplements a day. And, she thought I looked malnourished, so she told me I had to make an appointment for an exam at the health center.
I called my parents in near tears after the appointment. I've always hated confrontation, so the dietitian's rudeness made me extremely uncomfortable. Additionally, I was tired of my weight being an issue; I felt embarrassed and overwhelmed, and I've never liked dealing with medical situations without my mom and dad so I was becoming increasingly homesick. I was worried about the doctors at USC being as dismissive as the dietitian, and I just wanted someone to offer some actual help so all of this could be over. My parents were equally disappointed in how the dietitian appointment went. They called the health center to confirm that we wanted to find a doctor independent of USC, but the person she talked to was adamant that the school needed to be involved and accused me of being defiant and refusing care. My mom told me I should just go get the exam done so that they'd leave me alone. When I booked my appointment, I confirmed multiple times that Ashley would be allowed to come with me so that at least I wouldn't be all alone.
My exam at the health center was supposed to be at 4:30 PM that Thursday; I had told them when I scheduled it that I had class until 4. But, around three o'clock my professor gave us a break, and I saw I had a voicemail from student health. They had called to say they moved my appointment to 3:30. I started to panic, if they already thought I was being defiant me missing the appointment would certainly add fuel to their fire. The last thing I ever want to do is cause trouble, so I didn't want to be labelled as difficult. Luckily, this was the one class that Ashley and I had together that fall, so being the selfless person that she is she told the professor we had a family medical issue and then left class with me to take me to the appointment. Ironically, I remember I was starving, I had back to back classes on Thursdays and the sudden time change meant I hadn't had a chance to eat in many hours. That is the last time I can remember feeling hunger.
I checked in for my appointment, and shortly after a nurse came and called my name. Ashley stood to follow me in, but she was stopped.
"Which one of you is the patient?" She asked. I responded that I was. "She can't come in," the nurse said, gesturing to Ashley.
"She's my sister," I told her. "When I called, they said she could come with me."
"You'll have to talk to the doctor about that. For now, she needs to wait out here." My heart sank; I didn't want to go in alone, but even more so I felt terrible for making her miss class just to sit in the waiting room. The nurse took me into a room to take my vitals and do an EKG. About an hour after she left, the doctor finally came in. I asked if Ashley could come in yet, and she was opposed until I asked if, instead, I could call one of my parents so that at least somebody else could hear what she had to say. Ashley was finally let in, and after barely even speaking to us, the bombshell was dropped: she wanted to send me to the hospital.
I couldn't believe it. How could I possibly need to go to the hospital? I was just living my life normally two hours ago. I knew I needed to gain weight, but I needed a dietitian or someone to help me figure out what to eat to do so, not medical treatment. I never could have even fathomed that things were that serious. And I was certainly not going to check into a hospital in the middle of Los Angeles by myself. I asked what the other options were, and the doctor told me I was going to have to sign a form saying I refused treatment if I didn't go that night, but that I could do so and come back the next day to get lab work done so they could further evaluate whether treatment was actually necessary. I asked for the form, and then Ashley and I left in stunned silence. "I'm sorry," she kept saying, while I whimpered, "What was I going to do?"
I felt so ashamed that I had ended up here. I really, truly had been trying to gain weight. When my mom told me over the summer that her cousin had been hospitalized for malnourishment, that seemed completely out of the realm of possibility. I could understand if somebody was literally starving that they might need medical stabilization, but at this point in my attempt to gain weight I was eating at least six or seven times a day. And it wasn't like I was eating lettuce and carrots; after my disastrous meeting with the dietician I had stocked up on every high calorie food I could think of. I'd grab a handful of M&Ms every time I went into my kitchen and ended every night with a cookie I'd smuggled from the dining hall and a large scoop of mint chocolate chip ice cream. But it wasn't enough, and I just couldn't get over the fear that I had let everyone down. My family kept warning me, and I should have made more progress and stopped this from happening.
As we left the health center and walked to get dinner, I called my parents. They agreed that the hospital seemed like a drastic measure and assured me that we would stick with our plan: I'd find a primary care doctor and a dietitian in L.A., and we'd go from there. But half an hour later, my mom called again, saying that the head of the campus health center called them and wanted us all to meet on Zoom. Apparently, the doctor I saw had told this lady about me and she wanted me off campus right away. The school was concerned about liability if anything were to happen to me, so my choices were to go to the hospital in L.A. or go home, so long as I wasn't living in university housing anymore. But my mom said not to worry, she and my dad weren't going to let just kick me out of school. There was only a week and a half of school left until Thanksgiving break, so surely they'd be reasonable enough to let me stay until then and we'd figure out a plan for moving forward once I was home.
We laid out our proposal on the Zoom call, and the doctors pretty much laughed in our faces. Their intention in the call was to figure out how to get me to a hospital that night, but they were willing to let me stay through the next day if it meant I was going home, as there was a world-renouned wing of a Denver hospital that specialized in malnutrition and eating disorders. If I stayed, though, one of my parents was going to have to fly out to get me, and they didn't want me so much as stepping outside my apartment. They even told me not to come back and get the blood work I had scheduled done; it wasn't safe for me to be walking to the health center.
You have to understand here that I wasn't intentionally not taking my health seriously or trying to be defiant by disagreeing with their treatment recommendations. I was just utterly shocked and confused. Imagine you're feeling completely normal, going about your life of classes and extracurriculars, I had even just ran in a 5K event that weekend. Then, suddenly, someone tells you that you can't even walk through the airport on your own because your heart might stop at any moment, that you need constant medical monitoring otherwise your glucose levels might drop too low and you'll die in your sleep. I just couldn't wrap my head around what they were saying. But they succeeded in scaring my family, and by the end of the call it was decided that my mom would come the next evening to help me move home. When I talked to my parents alone that night, I was, understandably, not happy. "You told me you wouldn't let them do this," I cried, but they were stuck, and deep down I understood that. I just needed to be home, they said, but then we'd figure out what was next. They weren't going to just ship me off to the hospital though, there were plenty of other options we would research. And, on the bright side, I hated California weather, so at least I'd get to spend the holidays at home in snowy Colorado.
I was completely devastated. Since my entire first year of college was on Zoom due to COVID, this was my first semester on campus. There were so many things I had been looking forward to experiencing that semester, but most of all I was terrified about how leaving would impact my classes. Was I going to have to re-do an entire semester of work? I didn't sleep at all that night; I remember laying on our couch in the common area watching Sugar Rush Christmas all night and counting down the hours until it was late enough in the morning that I could either call my parents again or wake up my sister so I wouldn't be alone. When a doctor tells you that they think you're going to die in your sleep, trying to fall asleep is pretty unbearable.
I flew home the next day, and for a while, things seemed like they were going to be okay. We started looking for doctors and dietitians, researching and calling nearly every treatment place we could find. But we were running into two problems. First, it was almost Thanksgiving, and the process of setting up appointments and intake calls was extraordinarily slow, so getting answers felt impossible. Secondly, of the places we did talk to, we couldn't find anyone who would help me. My weight was too low that outpatient physicians and dietitians wouldn't take me on. There were some virtual and partial hospitalization programs that would at least allow me to be home some of the time, but these were primarily therapy-based and since I didn't have a diagnosis of anorexia or bulimia, I didn't qualify. We were able to schedule an assessment call at the a center for malnutrition and eating disorders in Denver, which I will call EDAM. This was a hospital that specialized in medical stabilization for people with life-threatening malnutrition, whether from an eating disorder or another condition. My call with them offered some hope; the intake coordinator that I spoke with did not think I would require hospitalization. Even though my weight was low, because I had fairly normal eating habits she wasn't concerned that I was at risk for refeeding syndrome, which is a dangerous condition that people who are starving are at risk of developing once they begin eating again. The lady gave my family the names of a few outpatient specialists that she knew who might be willing to see me. She said that the rest of the admissions team would go through my medical records and make a final recommendation, but her assessment was that I didn't need to go there.
I can't even tell you how relieved I was. I had been in the hospital a few times before for a spinal fusion surgery and some particularly bad bouts with pneumonia, so I remembered well the discomfort, the being woken up in the middle of the night, the misery when I'd ask for another blanket or to be unhooked from my IV's to use the bathroom and had to wait an hour before anyone came to help. If I thought that was bad, the EDAM Center sounded like torture. The worst part was that visiting hours were only an hour and a half each day. I was barely 18; I didn't feel like a grown-up at all. There was no way I could handle being in the hospital all on my own!
The weekend came and went in a blur, and on Monday the admissions team at EDAM was supposed to call us back after reviewing my medical records and notes from my intake assessment. I don't think my parents or I were seriously considering hospitalization in the first place, so after my phone call on Friday I had pretty much erased the possibility from my mind. So, I was caught completely off guard when the admissions team said they could have a bed ready for me by the next day. On the phone, they kept feeding me information about what to expect, asking if I had any questions. But I wasn't listening at all. Instead, I just kept thinking, "I can't go to the hospital, I can't go to the hospital, I can't go to the hospital." Meanwhile, my parents nodded and agreed as the doctors talked, and I willed them to hang up so I could make sure they were still on my side.
All of the doctors we had talked to so far seemed to be experts in scare tactics, and at this point. we were all scared. I don't think it's right for a doctor to so bluntly and emotionlessly tell any person they could die at any moment, but especially a kid. The main argument from the admissions team at EDAM was that, based on my current eating habits, it seemed like there might be something else going on that was preventing me from gaining weight. I couldn't afford to lose any more weight, my lab results showed that I had developed brachycardia and a form of hepatitis. If we tried to address any underlying issues outpatient, the process might take too long and put me at risk of organ failure. From that perspective, I could almost be convinced that going to the hospital was the right choice. But then I'd remember how miserable and stressful hospitals are, and think there was no way I could get better while in that environment. I needed to be home, safe with my parents. Up until that point, I had been trying to gain weight pretty much completely on my own. Couldn't we at least give it a chance working with professionals and see if I could make some progress? And besides, it was going to be a lot easier for me to gain weight on my mom's pierogis and my dad's Party Mix than on chunky, greasy hospital food.
We decided to go back to the primary care doctor I had seen in October to get an opinion from someone who at least new me a little bit. It was devastating because my pediatrician, who I had seen my whole life and who was the only one who's opinion we felt we could really trust, had retired earlier that year. This doctor I was seeing had only met me once, and she had pretty much no experience with malnutrition or eating disorders of any kind. So when she found out that the admissions team had recommended I come to the hospital, she pretty much said that if that was their recommendation, that's what we should do. She took more labs just to see if anything had changed, but since it was Thanksgiving week they wouldn't be processed until Friday, which was after EDAM wanted me to come in.
Ultimately, I was eighteen, so I could make the decision not to admit to the hospital. At this point, I felt really stuck. EDAM was truly the only treatment option we could find that would take me. I begged and begged that I could at least go to a Children's Hospital, where I would be allowed to have a parent stay with me. But to do that, I'd have to be admitted through the emergency room, and there were no guarantees that they wouldn't assume it was a restrictive eating disorder and admit me to the psychiatric ward, in which case I could have no visitors at all. I was absolutely petrified of dying; I barely slept anymore and was pretty much living in the kitchen, baking batch after batch of cookies to eat like my life literally depended on it. I had lost nearly five pounds in the three weeks between Halloween and my last doctor's appointment, which the doctor was concerned was drastic even if I wasn't eating at all, so if I was eating the way my parents and I said I was, she was certain I wouldn't be able to stop the weight loss on my own. I was too afraid to not go to the hospital if it meant I couldn't get treatment from anyone, but I was also too afraid to go.
After a lot of tears, I finally decided that it wasn't worth risking my life to avoid a few days in the hospital. The admissions team had estimated a week maximum to get all the testing done and get me on the right track before I could go home. And my parents promised that they weren't just going to strand me there: if I got in and it wasn't what we were expecting or I changed my mind, they'd get me out. Luckily, the insurance wasn't able to process in time for me to be admitted the next day. Since Christmas is my absolute favorite time of year and Thanksgiving weekend was always the start of Christmas at our house: decorating the tree, Black Friday shopping, gingerbread houses; we were able to convince EDAM to postpone my admission to the following Monday. Our Black Friday adventures were briefly interrupted when my lab results came through that my glucose levels were dangerously low. I had to go back to the doctor's office and get my blood sugar tested again, and if it was still low I'd have to be admitted to the hospital right away. Luckily, we were at the Dollar Tree (for some reason this was mine and Ashley's favorite Black Friday destination, even though they never had anything on sale) when the doctor called, so I piled the cart full of my favorite sour candies and downed handfuls of sugar on the way to the test, which came back normal. But still, the weekend went by far too quickly, and on Sunday night, the fun was over and it was time to prepare for my impending doom.
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