#MyPhlexiblelife - Lucy's Story

I grew up knowing that I just don’t eat certain foods. As I got older, the explanation for why progressed; it started with “you cannot eat this protein because it will make you feel ill”, then it’s “you can’t eat this because this is what it will do, and this is why that’s important”, and by the time I hit high school I was being told all the scientific reasoning behind it. That’s not a universal experience, but it helped me understand why I’m like this - and how I can manage it, which is the more important thing. 

Everyone I knew in Scotland grew up with me taking protein substitutes. To them, that was just Lucy - it was a part of me. They grew up not knowing anything different about me, and they were taught in school that some people have to take protein substitutes, sometimes it has to be during school time and, you know... don’t be mean about it. 

When we moved down to Birmingham I started at a new school, and that’s when I really started noticing my condition… it was a very othering process and for the first time it felt like, “Oh… there’s something wrong with me.” None of my new classmates had ever seen someone taking protein substitutes in school before. The PKU protein supplements then weren’t like they are today; they didn’t have cool-looking packaging, and the formulation then wasn’t as advanced as it is now. We nicknamed it ‘concrete’, because it looked like wet concrete and it dried like concrete. 

Let’s just say the other kids weren’t particularly nice. Sometimes it got chucked in my hair, and it would dry in there, and we had to cut my hair a couple of times to get it all out. I was bullied for my low protein bread being too white, because we had to hand-make it from flour made from potato starch, and it comes out pure white - it doesn’t look like normal bread. I had a very unpleasant time until I went to sixth form at a different school, where nobody cared what I ate and I built up a good set of friends. But all the high school bullying up to then caused a lot of food trauma, eating disorders, depression and anxiety - things that still stick with me today, unfortunately. It all started with food, and I’m still very self-conscious and reluctant to eat in front of people; if I eat in front of someone it’s like the cat version of “I trust you”. At the moment that only applies to my parents, and maybe four of my friends. 

It was while I was at high school, though, that I was starting to learn how to cook my own meals and be given more responsibility with my food - my parents decided that was the time for me to learn more about my condition. One awesome thing that helped is that my dad was a chef, and we would cook together, and developing that culinary ability was really important for me, so I could actually cook vegetables and not just make them… ‘bleugh’! Given that vegetables and fruit are all I can eat, being able to make them taste good is pretty crucial. Cooking and baking is still something that I love to do; I don’t like eating, but I love cooking. I can’t eat 90% of the stuff that I make, but I love seeing my friends get happy over cakes I’ve baked for them. 

My own diet is much more restrictive; I have to weigh out nearly all of my food. The only thing I don’t have to weigh out is fruit and some vegetables, and I either drink water or tea. So this morning, for example, I had yogurt with some Rice Krispies - specifically, 20g of Rice Krispies, which equates to 1g of protein. I don’t know if I’m going to eat lunch, but if I do it will probably just be a piece of fruit. My tea will be 240g of mashed potato, which equates to 3g of protein, and then some broccoli and mushrooms which don’t need weighing out. With each meal I have to take my PKU substitute - and I definitely notice if I’ve missed it; I become very unmotivated and in my experience it makes my depression and anxiety worse, because there’s more phenylalanine getting stuck in my brain. It’s a very small, imperceptible thing, but I can be quite grouchy if I haven’t had my protein substitutes. 

On the one hand, you could go: “I have this thing, and I’m going to let it limit my life.” Or you can just go: “Yep, I have this, but screw it - I’m going to do what I want anyway.” The latter of which has kind of been my attitude to life. So I went to work in the middle of a rainforest; I went to Cusuco National Park in Honduras to do conservation work. I was examining habitats by taking tree measurements, biodiversity profiles and stuff like that. I was also helping with the herpetology, which is looking at snakes, amphibians and lizards - and some of them were so cute! 

But the logistical side of it was getting a month’s worth of protein substitutes out there, which meant bringing it all over with me and paying $100 each way to travel with a massive trunk full of protein substitutes. The other question was how I’d move between base camp and satellite camp with all of my protein substitutes, but in the end we decided I’d stay at the satellite camp to make things easier. But one of the many amazing things about being there was the experience of being able to take tropical fruit off a tree, cut it up with a machete and eat it there and then - although this has absolutely ruined shop-bought food for me!

I’ve always had loads of energy to burn; when I was a kid I was doing sports almost every single day. I did gymnastics, ballet, swimming… I used to trampoline and play badminton competitively (not at the same time)... I would cycle almost everywhere. I was really lucky in that my parents would always encourage me to do things and have new experiences. At uni, before COVID, I would be playing volleyball twice a week, going to the gym, and once a week I would take part in a group that does medieval reenactments - essentially spending the whole time living as if we’re in the middle ages. I actually have medieval underwear, which is made of linen - cool in the summer and warm in the winter!

I fight with a double-handed axe whose name is Matilda and I love her. She’s real, but blunted, and weighs 2.5kg. I’m one of the stronger ones taking part, and we choreograph our fights, so we’re told that we need to pick a certain person up and throw them on the floor, for example. There’s two of us that will always be villains and we love being villains because it means we get to pick people up and ‘beat’ them - it’s so much fun! The events can last a day, a weekend or even a week, so it can require a little planning when it comes to my protein substitutes , and at meal-times I just pop into my tent and eat in there. 

At the end of the day, I have this condition and I have to manage it as best I can; if I don’t, I won’t get to where I want to be. My goal is to move to Finland, because that’s where all the environmental jobs are, and I’d like to do my Masters in environmental sciences at Helsinki University.

I want children with PKU to not feel like there's something inherently wrong with them just because they have this condition, and to know that even if people shun them, they're still worth something. I hope they never need to go down the path I did to end up where I am today, and I hope they recognise that PKU doesn’t mean they need to limit themselves. It just means they live each day a little differently. 

Disclaimer: The views/opinions presented are solely those of the individual and do not necessarily represent those of Nutricia.