Every PKU story is different. This is mine.
The more I learn about PKU, the more I realize that though we all struggle with similar things, we each own a unique (often emotional) story tied to our identity as a Phenylketonuric.
Because our bodies all react differently to protein and our tolerances vary and change, management is not an exact science and often feels more like a frustrating bout of trial and error. Some people remain steadfast and never stray from diet, others live most of their lives without treatment, and many (like myself) fall somewhere in-between—consciously wavering from periods of absolute dedication to uncalculated indulgence.
My story
In 2014, I went back “on diet” after over a decade of choosing to eat recklessly. As a child, the low-protein life was easy—my mom did all the work! She portioned my meals, tallied the protein in everything I ate, and was creative enough to make it all feel almost normal. But in high school and college, social pressures and curiosity got the best of me and a few “cheater meals” turned into a slippery slope. Left to my own devices, I treated food like a recreational drug.
Getting back on track as an adult has been beyond difficult. I’ve had to reteach myself a lifetime of information that used to feel like instinct. I struggle daily with balancing healthy habits with the foods I crave, and continue to define what PKU life is and what flexibility exists, juggling it with a full-time job and active social life.
“If my stories can dissuade others from making the mistakes I did or simply give peace of mind to those who are struggling, it will be worth all the time and effort.”
I am in recovery.
But I am also very happy; I am married and have worked hard to build a family, career and life that I love. And thankfully, those achievements have come with a strong dose of motivation to put in the work that PKU requires. I am choosing to live consciously, eat intentionally and promote my own health and future.
Like so many my age, when I hit my thirties I began to dream of motherhood. And even though I had been back ‘on diet’ for a few years, my body wasn’t ready. I struggled with consistency, my blood levels wavered, and I used the all-too-frequent “cheater meal’’ as a coping mechanism.
I’m now on the “Pre-Con” diet and I’m still learning. I’m learning to break bad habits, adopt new routines, and to measure phenylalanine with absolute precision. And though I’ve made recent strides and am more dedicated and determined than ever, I still feel like a novice and know the journey ahead is a long road.
Funnily enough, my past experiences eating ‘forbidden foods’ now fuel my path forward. I have been adventurous with food; it’s been a major (if not primary) element of my travels, a creative outlet, and a preferred method of celebration. I’ve eaten most things PKU-ers are told not to (and would more intelligently avoid) and I’m passionate about creating a diet that taps into those experiences, but promotes both curiosity and control. I love to experiment in the kitchen and invent new low-protein recipes, and I believe life with PKU can be just as bold and full of flavor.
PKU for Life
This blog will be an honest account of my experiences with PKU, past and present. If my stories can dissuade PKU-ers from making the same mistakes I did or simply give peace of mind to those who are struggling, it will be worth all the time and effort. I am proof that there's life and success despite faltering, and I’m an empathetic voice urging others like me to stay strong.
Until I attended the 2018 NPKUA Conference in July, I had never met another person with PKU. It was incredible to be surrounded by so many that understood the life and to hear stories that were both so similar and different from my own.
Connecting with so many PKU-ers at that event and on social media has completely changed my world. I hope this blog will be an opportunity to grow those connections and serve as a place to share, support and learn from one another. The PKU community is an invaluable resource.
I have spent years (over a decade!) ignoring my PKU, but that stops now. This disorder is not a choice; it’s a fact of life, and something that comes with many benefits that should be celebrated. “PKU for Life” is both my promise to persevere and a motto that serves well in the pursuit of a happy, healthy future.