This blog contains content about an eating disorder. If you or someone you know has an eating disorder, contact the National Eating Disorders Association helpline by calling 1-800-931-2237.
Three-thousand-six-hundred calories a day. That was the recommended calorie intake for me as a child with cystic fibrosis. When I was younger, the doctors repeatedly told my mom that I needed to be eating copious amounts of fat and sodium every day in order to be healthy. My mom did everything she could to make sure I did. The pantry was stocked with high-calorie foods, homemade dinners had extra butter and cheese, and at restaurants my mom would always tell me, “Just three more bites.” After some time eating like a 6’3” buff gym bro, I became accustomed to this intensive diet — putting extra bacon on my baked potatoes or eating a whole bag of Doritos in one sitting became second nature to me. My parents and doctors sang my praises for how well I was eating, and yet, I was still very thin. So much so that my parents decided on a new nickname for me, “Skinny Minnie,” since I was the girl who, no matter what she ate, stayed as small as a mouse.
Up until I was 16 years old, I was told to eat like this. That is, until a medicine called Trikafta came out. At the time, the medicine was still in very early development. I was advised to take Trikafta, but to keep up with my regular CF treatments, medications, and lifestyle. As years went on, I continued to take Trikafta, but I also continued to eat the same way. I didn’t notice just how much my body had changed until I looked at pictures my family had taken of me from afar. I looked huge, bigger than I ever had in my whole life. My doctors stopped praising me for my weight gain, and my parents stopped calling me “Skinny Minnie.” I felt ashamed of what I turned into. After my newfound awareness of my body, I decided I needed to change the way I dressed. Shorts turned into jeans, crop-tops turned into hoodies, and every time I passed by a mirror, I kept my head down. My body image was degrading into dangerous territory. This, however, was merely the beginning.
In November 2023, I began experiencing excruciating pain in my side. I remember describing this pain to my mom as “a knife twisting into my back continuously.” After going to the ER, I was told I had extremely large kidney stones. Apparently, all the sodium I’d been consuming caused these massive stones, and I had to undergo surgery to get them removed. However, the doctors were not able to schedule the surgery until later due to their availability, so I had to just deal with the excruciating pain in my side for three weeks. During that time, I was unable to move much and only consumed Jolly Ranchers each day. Eating caused the pain in my side to get worse, so I decided I just wouldn’t. Eventually, all my kidney stones were removed, and the pain in my side ceased. However, in early December, I caught COVID-19. I was bedridden for about a week, and once again, I only ate Jolly Ranchers.
Since I had gone about a month eating little to nothing, my weight dropped dramatically. I found I was able to look at myself in the mirror again. Despite the fact that I got my appetite back after all the ailments I went through, I still didn’t feel like eating. I was proud of how I looked, and I figured, if not eating is what helped me to look like this, then I must continue doing it.
However, as I began getting my energy back, I realized how much easier it was not to eat when I was bedridden. My healthy body was moving around more, walking around my campus, hanging out with my friends, dancing, etc. It began to crave nutrients to compensate for my activity. For a while, I was able to ignore the voice in my head telling me to eat. Until eventually, I snapped.
My restrictions ultimately backfired on me. I fell into a cycle of barely eating anything all day and then consuming double my daily calories in one sitting. Eating a lot was not new to me, however eating everything at once was something I had never had the urge to do before. I felt extreme shame after, but I would constantly reassure myself that the next day I would simply reset. This mindset led me to continue the binge and restrict cycle until I came up with another solution.
This solution, which is simply awful, was to simply “undo” my binges by forcing myself to throw it up. I had thought, “Even if I mess up, I can reverse it, so it’s okay.” This worked for a while. I knew in the back of my mind that what I was doing wasn’t healthy or safe, but in those moments crouched on my bathroom floor, I didn’t care.
That is, until one day I noticed changes to my teeth and face. I looked at a picture of myself from a few years prior. I compared it to what my face looked like in that moment and saw my cheeks had puffed up tremendously, and my front teeth had started to chip away. All the side effects of purging were catching up to me. While I had started this cycle to look better, I came out of it looking worse than ever.
From that point, I knew I had to stop. My mental health had been deteriorating, and I felt even worse about my body. I decided to consult my care team, and they provided me with continuous counseling on my eating habits. I slowly started being able to eat three meals a day again, which led me to a healthier weight and a healthier mindset.
I won’t lie and say that I’m completely healed. Eating disorders aren’t something one can easily move past. However, I’ve begun adapting to eating like a non-CF person and improving my incredibly damaged relationship with eating. The effects of Trikafta can be drastic in ways that are incredibly beneficial, but also in ways that are terrifying. If you’ve been struggling with your changing body the way I have been, just know you’re not the only CF kid who had to learn to eat again.
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