Okay, here's the part where some of you start to hate me, so before you do, let me say this: I know that there are so many people who struggle with their weight, and for most it is because they can't lose weight. I think that is a completely valid struggle, and I'm no expert, but I've read and heard expert after expert talking about how weight depends on so many factors besides just how many calories we are taking in and burning, so I would never for one second judge someone who is unable to lose weight. I just hope that you won't judge me, either, because for me, gaining weight was (and is) HARD.
The weight gain process has been more emotionally taxing than I could have possibly imagined. Throughout this post, I am going to give you glimpses of me at my absolute worst. Over the past year, my entire life has revolved around eating. I have turned down opportunities, missed out on time with friends and family, skipped classes, all because I had to prioritize eating. I felt like my life was ripped away from me. This was combined with intense feelings of failure and guilt at my lack of progress. It was so easy, all I had to do was eat. Anyone could gain weight, and I felt like such a failure every time I'd step on the scale and see a stagnant number, a reminder that I must be doing something wrong. Also, being malnourished, my body was in starvation mode. If you aren't familiar with the effects of starvation, my understanding is that basically the body is allocating all of its energy just to keep you alive, which means there's nothing left to control your emotions--and this manifests as fatigue, anxiety, irritability, and an inability to focus or enjoy things. And worst of all, I was constantly being reminded how I was still at risk of organ failure, of hypoglycemia, of dying at any moment. I was beyond terrified; I often couldn't fall asleep because I was afraid I wouldn't wake up. Sometimes I'd set alarms every couple of hours for comfort of knowing I was still alive, and each time the alarm went off I'd get up, brush my teeth, and drink a few gulps of a nutrition supplement to keep my blood sugar up through the night. So between all of these things, as well as the insane physical discomfort that comes with trying to gain weight, I was far from the person I wanted to be for the last year. I became irritable, mean, joyless, resentful. But I'm sharing this with you now because I promised to share my whole story with you, the good and the bad, and I want to be honest about my journey. Nobody's perfect, and we are all going to go through times where we aren't our best selves. The key is to learn from these times, accept and admit our wrongdoings, forgive ourselves, and strive to be better.
I never regretted leaving the hospital when I did. I think my parents have regretted taking me out at times, but in the big picture I truly don't believe it would have made that much of a difference. I needed to get out; my mental state at the time I was discharged was significantly poorer than it ever has been, and I am confident that the longer I stayed in the hospital, the worse it would have gotten. I am a neurotically organized, Type-A planner, so when I left the hospital you can bet I was as prepared as possible. I had already mapped out an excruciatingly detailed meal plan for the next several days, complete with measurements for all of my food and the exact times which they would start and end. I had an outline of what kinds of food I would eat for each meal each day of the week, along with a categorized list of snacks. I'd created a weight-tracking spreadsheet and wrote out my weight goals for the coming weeks. I was ready, motivated, and unstoppable.
But what I hadn't prepared for was life. About a week after being discharged from the hospital, I developed the most unbearably intense nausea you could possibly imagine. We knew that GI discomfort was an unwelcome side effect of weight restoration that I was going to have to get used to, but this was on another level of awful. I kept eating, I knew I had to keep eating, but the only foods that didn't make me feel like I was going to puke my guts out were animal crackers, Clif Bars, and (strangely) vanilla ice cream. My meals often ended up consisting of strawberry Ensure blended with ice and frozen strawberries, the least of evils for getting a high amount of calories and the frozen texture helping distract from the sickly sweet taste. We tried everything we could think of to relieve the nausea, but nothing seemed to be working. Ginger lozenges and sea sickness bands were my saving graces, but their effects were minimal.
To help with the nausea, my primary care physician prescribed Esomeprazole. I was desperate to try anything that would help at least make eating a little bit more tolerable. But after a week of taking it and seeing a significant drop in my weight, we learned that a side effect of the medication was weight loss. And thus started the long and cyclical process that I'd be in for the next year: it was a lot easier to lose weight than to gain it. I could lose a pound and a half in one day and throw the entire week's progress down the drain. Each time I lost weight was incredibly frustrating and discouraging. Again, it seems so stupid. All I had to do was eat, it should've been the easiest thing in the world. But imagine eating when you are in so much discomfort that every swallow feels like a rock going into your stomach, when you've just come from a place where eating was treated as a punishment and just the sight of food makes you anxious, when you have to eat such large quantities that you are left at the dinner table alone long after everyone else has finished and moved on with their lives. I said to my mom over and over again I wished there was a way I could get reverse liposuction or something, I just wanted the weight back so I could be done with this excruciating process.
I once heard someone say that if a person is really committed to weight gain, they will gain weight. I don't necessarily think that's true. I am sure from an outside perspective, it seems impossible that I was really working hard and still struggling so much. But the big problem was that how slowly I was gaining weight combined with how quickly I could lose weight on a bad day meant my progress was minimal. Every time I'd lose weight, I would promise myself I could not have another bad day, no matter what. I would stay up until 2 in the morning when necessary to finish everything on my meal plan. I would skip time with family or outings with friends when it interfered too greatly with my eating schedule. I rode in a wheelchair even when just going grocery shopping to avoid burning excess calories. I kept spreadsheet after spreadsheet logging what I was eating and keeping track of meal plans, food ideas, and symptoms to make sure my family, my doctor, and my dietitian were all on the same page.
Some people advocate for an "all-in" approach to weight restoration; rather than following a meal plan, you just eat everything you want, when you want it. I couldn't do that. I always felt full, food had almost entirely lost its appeal to me. Even during Christmas, I was constantly disappointed as I'd eat what used to be my favorite cookies and snacks and my dad's famous Christmas Eve soup, and was unable to enjoy any of it. If it were up to me to eat what I wanted, I'd be living off of hard candies and Gin-Gins. So my rigid schedule and planning was neurotic, but it had to be. I wasn't perfect every day, but I was certainly committed.
As much as I tried, though, it was impossible to never have bad days. For one thing, GI issues are a common side effect of weight restoration. I was trying to eat high calorie and low volume foods, many of which were things I had rarely eaten growing up, so as someone who's always had an extremely sensitive stomach, there were many times where it seemed that nothing I was eating was actually staying inside of me. And then of course there were days where life just happened: a shopping trip lasted extra-long and delayed dinner many hours, or I woke up with a sore throat and couldn't eat solid foods all day, or I accidentally fell asleep and missed my last snack.
Navigating my new normal was difficult for my entire family. We never really made a plan of who was going to be in charge of cooking, making my meal plans, etc, but as soon as I got back from the hospital, everything just kind of settled into a normal routine of my parents working, so I gladly assumed responsibility. I felt like I had lost control of everything else in my life, so I wanted to be in control of my recovery. I wanted to figure out what worked best for me: how frequently to eat in a day, how to spread out portions between meals, how much time to allot myself to finish eating. I knew I could trust myself to stick to my schedule, to make sure my meal plan was ready for the next day, to keep track of ingredients we had and options that were available, and if I didn't, it was on me. I remember one time Ashley had planned a day of Christmas activities for me that was supposed to consist of all our favorite holiday foods, and though I appreciated it immensely, I was a complete ball of stress. When it was taking her longer than planned to prepare a snack, I'd get antsy: "how much longer do you need?' "Is there anything I can help with?" "When will you be done?" Then, naturally, I felt bad. I didn't want to seem like I was pressuring her or be annoying or ungrateful, which in turn would just cause me to feel more stressed. I hated feeling like a burden, so taking care of myself removed a lot of guilt. I wasn't opposed to help, either, I wanted my parents at every doctor's appointment and dietitian call, and I wanted somebody confirming that I was doing everything I needed to be. Meanwhile, my parents wanted to help me too, we just weren't sure the best way to approach this new responsibility we all shared.
So as Spring semester was approaching and my weight continued to boomerang, I began to feel an intense amount of pressure to prove myself. I knew my parents didn't want me to go back to school, and I was desperate to go back. I had lost my first year of college to COVID and a good portion of my second to my health; the college experience I had been dreaming of was far overdue. Now, not only was I stressed about eating enough, but about making sure everyone could see I was eating enough. Of course, my parents were worried about me, too. Even though most days I was gaining at least a little bit of weight, big-picture I was barely heavier than when I left the hospital; clearly something wasn't working. Tension was high as we all struggled with the line between daughter and parent and patient and caretaker. Someone would comment about me taking too small of bites or putting too much salt on my food and my stress would skyrocket: I assumed it was a sure sign that everything I was doing was under scrutiny. I couldn't mess up.
Eating became even more challenging with the added stress of wanting to please my family. One night my mom made tacos for dinner, and I thought I was doing the right thing by choosing a flour tortilla instead of corn. For one, flour tortillas had more calories, and I only liked corn tortillas when they were crisped in the oven, which would take another several minutes and make me late for dinner. I piled my taco with guacamole, beans, and cheese (even though I had a developed a major aversion to cheese after a grilled cheese sandwich from h*!! at the hospital), and sat down, and immediately my dad said, "You can't eat that!"
"Why?" I asked, utterly befuddled. My mom and sister seemed equally confused. He launched into an argument about how these were high-fiber tortillas, and he thought that fiber cancelled out calories which meant that the tortilla practically had negative calories (that's not exactly how fiber works, which my mom and I did have my dietitian try to explain to him after this incident). I started to cry. Here I was, looking like a failure again, even though I truly thought I was making the better choice.
"Then what do you want me to eat? Tell me what you want me to eat and I'll eat it."
"I don't know, but you shouldn't be eating those."
"Okay, then I'll make a new one on a corn tortilla."
"Well, those don't have many calories either."
"But that's all we have, so I don't know what I'm supposed to do!"
Moments like these all came out of a place of love; my parents loved me and wanted to help, wanted me to get better. I loved them and I didn't want to let them down. But I was often frustrated because I felt like everything was a no-win situation; no matter decision I made it was wrong. I needed to put all of my focus on eating and put everything else second, but I needed to be flexible and not make us plan around my eating schedule because that wasn't normal. I needed to eat plain and mushy foods to lessen the GI symptoms that seemed to be stalling my weight gain, but I needed to eat the things that bothered my stomach to train my digestive system to tolerate them. As I prefaced earlier in this post, I was not feeling like myself, either. I felt sad and anxious and irritable all the time, and I hated it. I was stuck in this never ending cycle of being upset and then feeling angry with myself for being upset, which would only put me in a worse mood. I wanted to be alone all the time because I always felt like I was bringing everyone else down, but I hated being lonely.
Because of all this, there were times when I was really terrible towards my parents. So when they decided they didn't think I should return to school for the spring, I blew up. This came up in a conversation recently and I think we all have different versions of the story, but the way I remember it is that we had agreed on a target weight that I'd need to reach in order to go back to school, and they'd suddenly changed their minds. I was so tired of having the rug pulled out from under me, so tired of the story changing. I screamed at them about how they kept misleading me: they said they wouldn't allow USC to make me leave, they said I wouldn't have to go to the hospital, they said they'd get me out of the hospital if it wasn't what we thought, and now this. My feelings were valid; in all of these instances I had felt blindsided. But no one was intentionally misleading me, and I knew that, they were just trying to do what was best for me. I remember how hurt they were, and the searing pain of guilt. Recovery was turning me into a monster, and sometimes I wasn't sure if that made me want to push harder to get it over with or just give up all together.
After consulting with my doctor and dietitian, we did come up with a new agreement for school. I had to miss the first couple weeks of classes, but I was ready to return by February. Like when I came home from the hospital, I had taken every possible measure to prepare. I created an eating schedule charted out around my classes for each day of the week and a document full of recipes categorized by type of food and estimated calories. I updated spreadsheets daily with what I had eaten down to exact measurements so that my parents could keep track of what I was doing.
Unfortunately, I couldn't continue seeing my dietitian because she wasn't licensed in California. I began the hunt of finding a new dietitian (there was no way I was going back to the one at the health center), as well as a therapist to help relieve some of the emotional turmoil I was going through. I'm not going to launch into a long complaint about problems with the healthcare system right now, but the long story short is that every provider I could find either didn't take my insurance or didn't have appointments. My mom tried to find a Primary Care Physician for me to check in with while at school, and the only one in Los Angeles on our insurance plan was 30 minutes away from campus, without traffic.
As I continued to hunt for a new treatment team, the semester went by in a flash. Suddenly it was spring break, and then Easter, and soon enough it was finals week. My weight continued to fluctuate in the same pattern it had at home: up two pounds, down a pound, up half a pound, down half a pound. When April came, I was only about three pounds further than I was in February, and then I came home for a quick trip over Easter and the whirlwind of travelling combined with too much physical activity playing tennis with my Grandpa and volleyball with my cousins all weekend left me returning to school having lost two more pounds. At this point I, and I think everyone in my family, was more than ready for school to be over so that I could come home and figure something else out, because I could not keep doing this.
I don't think I can overstate the level of both frustration and guilt that I was feeling. First of all, I just didn't understand how gaining weight could be SO hard. They had warned me at EDAM that the weight gain was going to be much slower outside the hospital; my metabolism was so hyperactive that just daily activities like laundry and cooking could burn a significant amount of calories. But I never expected it to be this hard. I wondered where everything I was eating was going; there were so many days where the amount of eating was excruciating, but I'd go to bed at night feeling proud of myself for pushing through, only to wake up the next morning and see an unchanging number on the scale. Every time I hadn't gained weight I'd start out the morning with half a bottle of Ensure, even though it made my stomach hurt so bad that classes felt unbearable. And yet, my weight crept up as slowly as could be, which would've been fine except for the inevitable drop that came every couple of weeks. I was at a loss of how to speed up the weight gain, so each time it dropped I was back to square one. I was becoming incredibly discouraged, it felt like I was stuck in some sort of groundhog day that I'd never get out of. More than anything, though, I just felt so ashamed. I was failing, again. I had begged and pleaded for my parents to let me go back to school, swore I would make progress. Outside of my immediate family, few people knew the whole story, but most of my family and friends knew parts of it, and it was obvious I wasn't at a normal weight. Surely nobody believes me anymore that I'm trying, I'd think. I couldn't imagine what they all thought of me. I was used to being the front of the pack, the model kid, model student, model patient. I was the same person who told all the doctors before a major spinal fusion surgery that I'd be walking the next morning and then went ahead and did it, even though they didn't expect me to so much as stand on my own for days. I wanted so badly to be the perfect picture of health, the proof that all the doctors at the hospital and everyone else who told me it couldn't be done were wrong, to show my family and friends and everyone who cared about me how committed I was, how hard I could work. But instead, I was coming home with the same skinny arms and sunken eyes, the rigid meal schedule and lack of joie de vivre, as I had left with.
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