Evaluating regret: 5 things that may have helped me stay on diet

In July 2018, I attended my first NPKUA Conference. I flew across the country to Atlanta, nervous to embrace the PKU community for the first time, and not at all prepared for how emotional the experience would be.

The 3-day conference sent me on an introspective journey that forced me to look deeply at my past and what more I could do now to embrace PKU as an adult.

Some nights, returning to my hotel room, I would review the notes and photos I took from the day and cry. Not subtle, quiet tears...but desperate sobs of regret. How could I have been so stupid? Risked my health so recklessly? and neglected a community (and support system) that was always in reach?

On the first day, they played two videos I will never forget--one on the Medical Nutrition Equity Act and another advocating the research and donations that could advance treatment. The videos highlighted stories of various PKU patients--two of which shook me to my core and snapped both my mistakes and blessings into harsh perspective.  

• Danielle Teigue had been off-diet for years when she got pregnant. She couldn’t get coverage for her formula and with lack of treatment, her son was born with Microcephaly and other birth defects caused by Maternal PKU Syndrome.

• Matt Cortright was on diet as a kid, but went off in his late teens and twenties (just as I did!) and suffered multiple seizures and other neurological consequences that left him with permanent challenges

Still struggling with my own recovery from years off-diet and aspiring to be a mother...i thought: why have I been so lucky? Their stories could have just as easily been mine.

Talking to other PKU patients and parents that weekend, I began to wonder what value my story had to others...especially to kiddos and teens that would surely face many of the same challenges I did. So, I stopped asking myself where and why I went astray, and instead asked, what would have helped me make better choices?

Below are 5 things that I think may have made all the difference...to help me stay on track, on-diet, and PKU-strong.

1. Learn how to count protein as a kid, and be expected to do it.

When I was a kid, my mom was the expert. She tallied the protein I ate as a baby, all the way through my teenage years. Over time, I learned the amount of protein in my favorite foods (mostly through osmosis), but wasn’t held accountable for counting, measuring or determining if the things I wanted to eat were within my daily protein allowance.

Taking this on as a young adult and college student was a steep learning curve... less so from a mathematical standpoint, but more in the discipline it takes to do consistently. Learning at a much younger age would have made it easier to adopt as routine or simply as a fact of life--like doing your chores/homework or brushing your teeth before bed.

And I’m not naive enough to assume it would have been easy. I probably would have protested or offered wavering levels of cooperation, but taking responsibility for my diet and treating it as a daily practice would have made the transition from childhood to adult responsibility a lot less daunting. I wish I had learned not only the protein content in my favorite foods, but to have been expected to measure them. And even more challenging, how to estimate the protein content in ingredients that weren’t listed, or how to scan a menu for what was within my allowance and ask for necessary substitutions. Like any other skill, living with PKU takes practice. And on a grander level, I believe starting as a kid may have made it easier to truly own this part of my identity.

2. Help Mom cook and have fun with it!

One of the things I’ve enjoyed most about going back on-diet is cooking. Experimenting with new low-protein recipes is fun, keeps me motivated, and teaches me new things every day. I wish I had found this passion sooner!

As a kid, what’s most frustrating is feeling like you’re constantly being told what you can’t eat--and worse, that you’re being told “no” while watching your friends, siblings, and others enjoy the things you want.

Don’t get me wrong, my mom did a great job creating special foods for me and often thought up new recipes so I wasn’t stuck with a just few staples on repeat. But it was still different than what everyone else was eating, so even her best efforts often fell short of the norm.

Helping her cook and being involved in the ‘creative process’ could have helped. Not only would I have understood the ingredients and learned more about protein content along the way, but cooking develops a sense of pride and excitement for the things you create, and by extension, an appreciation for the things you can eat.

...Perhaps we could have even cooked family meals together, and invented variations of high-protein dishes or PKU-friendly treats that everyone could appreciate. Those things fuel my commitment today, and make PKU seem a lot less restrictive and more interesting.

3. Understand the dangers of going off diet—in detail.

All kids are fond of the question “why?” ...And as a PKU-er, it’s a big question. Why can’t I eat that? Why do I have to take my formula? ...What happens if I don’t do what you say?

When I was a kid, I always got the same warning, “If you don’t take care of yourself,  PKU affects your brain.” And while there’s obviously no disputing the significance of one’s brain, what exactly does that mean?

PKU is clinically defined as a “brain-threatening, metabolic disorder” and I have always understood that without treatment early in life, I would have probably suffered from severe mental retardation and/or behavioral disorders. But I was also aware that as I got older, the consequences were less extreme. So, what do they mean when they say, “it affects your brain”?

“If I had heard other PKU patients went off-diet and suffered consequences later in life, the details would have helped answer my questions and heed a true warning; they would have put my decisions (and temptations) in perspective.”

If I had heard other PKU patients went off-diet and suffered consequences later in life, the details would have helped answer my questions and heed a true warning; they would have put my decisions (and temptations) in perspective. ...If I had heard their stories, seen their faces, known the dangers of going off diet in detail, I don’t think I would have made the same mistakes---at least not as many of them.

When I sought out that information as an adult going back on-diet, I was devastated to learn how much i had gambled with my own health and future. As a teenager, it’s almost natural to rebel (especially against parental platitudes), but information coming from the source and the opportunity to draw your own conclusions and act accordingly is empowering.

Experimenting as a teen sent me spiraling into over ten years of ignoring PKU and disobeying every guideline and restriction of the diet. ...I’d like to think with more information, I would have expressed my independence more wisely.

4. Have direct contact with my clinical team.

I remember always being intimidated by my doctors and dieticians at clinic. Even when my diet was on track, I felt like i was listening to adults assess my health like a report card. I worried about their assessment, what it would mean after we left, and feared what would happen if our discussion (and my blood levels) didn’t measure up.

As a young kid, it was natural that my parents would take the lead and discuss the details of my treatment with our clinical team. But when I was older---and I began giving in to social pressures at school, eating things I shouldn’t, and surmounting all kinds of PKU challenges and questions---I still acted as a spectator and approached clinic check-ins with fear. Rather than seeing the team as a source of support, guidance and information, I lied to them and wove tales of diligence, despite the fact that they didn’t align with my blood results. My parents didn’t know what I was doing, so our visits did everyone a disservice…having to wonder whether my tolerance was changing, or I wasn’t getting enough calories, or I simply wasn’t telling the truth.

Eventually (in my late teens), I stopped going to clinic all-together as not only did I dread every visit, but it didn’t seem to do any good. It simply became a waste of time and expense when the information required for progress was being twisted and withheld. (Arguably my most foolish decision to date...as lacking support and medical guidance greatly contributed to plummeting further down the rabbit hole.)

It wasn’t until I went back on diet as an adult that I returned to clinic and began to change my perspective. In going solo, I owned the discussion and no longer had to worry about my honesty and frustrations resulting in punishment or worse, parental disappointment. Instead, I was able to ask questions, admit defeat, and navigate the most difficult aspects of returning (and staying committed) to the diet with informed advice. My team not only showed empathy, but eased the blow of my setbacks with stories of other patients struggling with similar things and what they have done to find success.

Today, contact with your clinical team is easier than ever, and supported by technologies that make taking advantage of patient services a lot less daunting. If my dieticians had always been just an email away---and better yet, if we shared a direct line of communication---I hope I would have opened up more to face the social pressures and plights of teenage independence with more information. Sometimes the advice and guidance you need at that age, just can’t come from your parents.

5. Embrace the PKU community at an early age.

When I found the PKU community on Instagram, it changed my life. Around the world, other PKU patients are sharing their stories, recipes, struggles, and triumphs. They’re posting about daily life with PKU---one day focusing on it, and the next, sharing a memory or adventure that has nothing to do with the disorder. And it doesn’t get more authentic or humbling that that. Some days PKU is all-consuming (in negative or positive ways), and the next, it’s secondary to the rest of your life. But seeing how others thrive at the balancing act is inspiring, educational, and comforting. Often, my own posts turn into conversations and over just a couple of years, I’ve found support and friendship from every corner of the world.

“Some days PKU is all-consuming (in negative or positive ways), and the next, it’s secondary to the rest of your life. But seeing how others thrive at the balancing act is inspiring, educational, and comforting.”

When I attended the 2018 NPKUA Conference, it was the first time I had ever met someone else with PKU. I was thrilled to recognize so many faces from my social feed, but better yet, to form connections deeper than they could ever be from behind a screen. I also learned that many people my age have had this kind of support their whole lives and how much it had helped them; I felt like a fool for refusing it for so long.

But as a kid, I know this kind of interaction would have had to be forced. I wish I had been proud of my PKU and strong enough to talk about it openly...I wish I had owned it as a major part of my identity throughout my life...and more than anything, I wish I had been eager to know others with PKU, who were “different” in the same way. I naively hope today’s generation is more willing to celebrate their differences and are stronger than I ever was, but I suspect many will need the same push. I wish my parents had pushed me---even if it meant brute force. PKU connections are invaluable.