Dionne, born 1986

For the longest time, I never wanted anyone to know there was something different about me. I lived my PKU world in the dark, in silence, alone. As a child, my parents would always make a separate meal for me, most often some type of salad and all the green beans I could handle. I had what all my classmates would call “potato milk” to drink, when they had juices, Gatorade, sodas, you know – normal things. I always stood out in some way, and most people just wrote off my uniqueness as “something medical,” and when asked about my dietary restrictions, I would shut down and say it was something medical, perpetuating that stigma and rarely ever letting anyone into my world.

I was a very active kid, adolescent, and that has since continued into adulthood. But one thing has changed drastically. I am no longer quiet about my disorder. I realize, now, that it has made me who I am. That is someone who is strong, independent, smart, aware, and above all else – healthy. I was lucky enough to become a very competitive and successful figure skater. I was part of the 2004 Team USA Synchronized Skating team, representing the United States all over the world. The hard work that was required to compete at that level is undeniable, and I wouldn’t have been able to do it if it weren’t for being able to manage PKU on my own. My parents taught me very young how to take my own blood levels, manage my food and formula, and it’s made all the difference.

But since turning 30, I’ve had some realizations. I can only worry about what I can control. One of those things is either choosing to talk about PKU, or not. Keeping quiet about having PKU hasn’t done me any favors. Most of the reasoning behind staying silent was that I never wanted to feel different, or have any sort of special attention paid to me because of having PKU. Something changed though, a very close friend of mine was getting married, she knew I had PKU and wanted to accommodate my diet at her wedding. She worked with her venue, and they made a specialized meal for me. I provided some low protein pasta, and they whipped up an amazing dish that I couldn’t have replicated on my own if I tried. It was amazing. After a lifetime of minimizing my disorder, and being okay with the standard salad and potato option over and over again, to feel so included was great.

I started to realize that my silence has hindered what is possible for me – both in dining options and otherwise. I’ve now become very involved in the PKU community and am a board member of the Michigan PKU Organization. Being able to meet others in the community, help where I can, and get involved has made all the difference in my own care for myself.

One of the things that has its challenges as an adult is managing the disorder on your own. All of the medical bills, explanation of benefits, insurance payments – it can be overwhelming, but one of the things that PKU has taught me is the importance of organization. Most people who don’t deal with the disorder have no idea what it entails exactly, but they seem quite shocked when they get a glimpse into what I go through on a daily basis. My close friends, even my parents are pretty in the dark about what goes into managing this diet since they haven’t been responsible for it in quite some time.

Managing the disorder on your own is a lot to handle, but then there is the added factor of being a 31 year old single female, and trying to find a life partner in this weird online dating era. Dating in general is tough; there is a lot of pressure from friends and family to find your mate. There are always the questions about if you’re dating anyone, do you think you’ll ever get married…etc. That’s enough pressure on its own, then adding PKU on top of that? It’s a lot of pressure! Dating with PKU, especially in your thirties, has a different level of complexity to it because at this age, people typically date for a purpose. I’ve had dating experiences where men are excited to add some new dietary flair into their normal eating habits, and others who have run for the hills when hearing that I’m a “vegetarian for medical reasons.” It is a pretty quick way to weed out the gentlemen who are clearly not Mr. Right, that’s for sure.

Overall, I’m thankful for the presence of social media so all of us PKU adults can connect and not feel so alone in our day to day struggles. I’m thankful that I have chosen to live my own truth and not be ashamed of my disorder. And most of all, I’m thankful I have PKU. I would not be who I am today without it. Sure, it’s made some things more difficult, but I definitely believe that has built my character. I’m optimistic that someday soon I’ll be lucky enough to finally meet the man that is thankful I have PKU as well – because it has made me into the woman I am today.