Life stages of PKU and gaining confidence in your diet – The teenage years.
It’s so strange to write this, knowing that at the end of this year, it is my 30th birthday, and well over a decade since I was actually a teenager! For me, the ages of 13-18 were difficult. Not only for PKU, but just with school and life in general. I’d love to go back to my younger self now and save her a few of those “you can only learn things the hard way” style lessons that life throws at you. This is exactly why I write these blogs, in the hope that my experiences may help others and help them feel like they are not alone.
What’s helped my confidence regarding my diet is realising I’m going to have blips, and that’s okay. It’s not the end of the world and especially when I was a teenager, I had so much going on in my head. I was trying to figure out who I was, what I wanted in life, education, boys, and going out with friends. I didn’t see PKU as my “special diet”. I didn’t want to be special. I just wanted to be normal, and this frustration definitely lead me down the path of going off diet.
On this note, if my parents in particular are reading this blog, this is a warning! I’m going to be very honest about my diet right now, so turn around now before it’s too late!
“Peer pressure” are the two words that every parent fears, regardless of if their child has PKU or not. Whether it’s sex, drugs or rock n roll; every parent fears their child getting in with the wrong crowd, especially when they are teenagers. I would say however with my PKU, peer pressure around food isn’t necessarily caused by others, but by what I would call ‘you pressure.’ Maybe I was lucky, but none of my friends ever forced me or bullied me into eating badly or to go off diet. They just left me to it, they had some basic understanding of what my PKU was and they let me get on with it. It was my own self that made me feel like I had to look ‘normal’ and to eat ‘normally’. For me, it was especially true when I was spending time with my boyfriend or going into town with my college friends for lunch. I suddenly had my own money, freedom and independence and I realised no one would stop me!
The more I ate, the harder it was to stop, convincing myself ‘one bite wouldn’t hurt’. The problem with a ‘one bite wouldn’t hurt’ mentality is that my gauge for what one bite was would get wider and wider. Before I knew it, the sneaky chocolate bar would turn into a daily chocolate bar from the vending machine at work, or the odd biscuit at work, turned into helping yourself to the pastry treats someone brought in on a Friday. The occasional visit to the local kebab shop for a little treat turned into a weekly trip to get chips. The normal chips turned to cheesy chips and at one stage a garlic bread was added to my order!
I always say my biggest advice is NEVER eat cheese. It is so addictive, I joke to my friends that it’s like my drug! It’s just as tempting, addictive and damaging for me! The ‘not even once’ campaign can definitely be applied to cheese.
My friends and boyfriend probably also didn’t realise the extent of how far PKU goes, how strict I actually had to be and and if I’m honest, I probably used this to my advantage. I knew they wouldn’t call me out or tell me to stop like my parents of course would have. I wish I had been honest with my friends from the start but I was scared that they would turn into my carers, that they would feel obligated to look after me and scared to go out to eat. Because of this, I never asked for their help with my diet. I just got on with it, wanting to be independent but also wanting to be free. I recognise now that this was a big mistake but I’m proud to say the relationship I have with my friends now has greatly improved since then.
Fortunately, now in 2023, getting food out and about is definitely easier for PKU people than back in 2010 when I was in college with my own money at the age of 16-18. Pretty much every restaurant now has vegan cheese as standard. Being health and environmentally conscious is much more of a bigger deal, so maybe if teenage me was around now, I would have made better decisions for myself because there are now better options available?
I honestly didn’t think going off diet was affecting me for a long time. I didn’t even consider that I was going off diet, as I was still having some (albeit not all) of my drinks and my mum was still making and weighing the meals I ate when I was at home. As I have discussed before, there is no immediate allergic reaction to eating this food, so I thought I was ‘getting away with it’, but looking back, the damage was definitely being done.
How I feel now vs how I felt then, it’s obvious going off diet was negatively affecting me. I was very emotional, erratic, unable to focus, clumsy, tired all the time, foggy headed a lot of the time and if I had really gone too far, the next morning I would be slurring my words. I don’t want to think of the damage it was doing to my brain. I think the thing that finally pulled me back was realising, it just wasn’t worth it.
As delicious as this naughty food was, or as good as the feeling of being independent was, none of that was worth it. Not the food hangover I was getting, the feeling of literally losing my mind, the weight I had gained (I gained around 3 stone in just under a year!) and how a sudden change in diet completely ruined my teeth! I went from only having one or two fillings to a whole mouthful of metal, because I was eating textures and foods that I had never had before. I just wish I had realised all of this sooner rather than later.
It was never just about how delicious the food was (although it doesn’t help when you’ve had a lifetime of growing up with bland PKU prescription food) but more so what was going on in my head. I wasn’t a confident person. I was bullied through the majority of my school years due to my ginger hair, I was struggling to get on with my mum (as most teenage girls do!) and at the end of school, I was making those ‘big life decisions’. What subjects I should pick? College or 6th form? University or work? Your whole life is in front of you, which options should I take? The one thing I had no choice on was my PKU. Going off diet when you’re a teenager is just another way to take control of your world, to help find your own identity away from the label you’ve been given all your life. My go to line when describing going off diet as a teenager is “Other teenagers’ rebel through drink and drugs, PKU teenagers’ rebel through doughnuts and pizza.”
Something that I understand better now is that although peer pressure didn’t affect me much as a teenager, we can make the choice to have healthier friends. Our diet is important, it needs to be taken seriously and that means it has to be considered at all times. My friends now, who know my past, know how easy I am tempted by eating bad food, and know I’m trying my best to stay on diet. My friends will now make sure to ask me what I need if I’m visiting them or if I’m staying over the night. They will go out of their way to ask if I need any snacks, what fruit they need to have in the house, or if we go out for the day, they will remind me to make sure I pack my low protein food snacks as well as normal food. They will pick and find vegan restaurants in the area we visit for me to enjoy, so we can still have a nice meal out without having to compromise on my health.
I’ve realised I have to stop myself from feeling guilty, like I’m being selfish or putting them out of their way and from feeling like I’m forcing them to do this for me. They aren’t! They want to do it because they are my friends, because they love me and they want me to be healthy. True friends will make that effort for you and your PKU, because my PKU is just as serious as any other condition.
For example, if I had a friend with a peanut allergy, I wouldn’t consider it rude if that friend asked me to no longer have peanuts in the house or if we wanted to go out for a day, I know I would check for restaurants in the area that were allergy friendly. PKU is no different and it’s okay to let your friends do that for you.
PKU can really show the red flags in a friendship. I’ve had friends in the past that weren’t willing to be flexible with where we eat, or whenever I would visit, we would only ever get take away. Sure it is a nice treat every now and then, but for me it could not turn into a weekly habit. They just wouldn’t think or want to put the effort into having PKU friendly food in the house.
What’s interesting is I find that with the friends that aren’t willing to accommodate for my diet, we tend to fall out over something else in the long run, so the diet and how they handle it is a big red flag that this friendship won’t work long-term anyway. So now I understand that asking for help is okay, no matter at what stage of your life, and a good friend will want to help you with your diet – a bad friend will not.
I am a huge advocate of making parents aware that their PKU child will probably go off diet at some point. Whether that’s just cheating occasionally, sneaking food, or going full blown out for a cheese pizza with their friends. You can’t have a whole childhood of control and not expect some kind of push back during those years when you are at your least confident and most vulnerable to bad decisions. To used a clichéd example, it reminds me of parents who are incredibly strict with their children through their childhood, only to find that at the first taste of freedom, the child struggles to cope with it and very much “rebels”.
My personal concern is that consultants or dietitians may not be honest with the ugly side of PKU. Maybe they don’t want to scare parents or worry them about what their child will do regarding diets and lifestyle. I believe that education around PKU is critical for parents. Arming them with information and understanding is always the best way forward. My mum said at the NSPKU conference one year she heard Eileen Green say ‘blips in the diet are okay! And they do happen!’ which really helped her accept that things weren’t perfect all the time. I really hope that any parents of children, teenagers, or young people with PKU understand that unfortunately, you cannot protect your children forever. They will definitely learn lessons the hard way, just be there for them when it goes wrong, with open arms and understanding!
For those growing up with PKU, teenage life, including going to college or university, hanging out all hours with friends or having a partner, it is a whole new life of independency that is exciting and new and one we don’t experience before. With our food, diet and life being so strictly controlled, it’s only understandable that my first taste of freedom was the taste of glazed ring donuts. I wish that I had been more open with my friends, more willing to ask for more help to keep me on the straight and narrow, and to realise sooner rather than later it’s really not worth coming off diet.
I really do hope life is easier for those growing up now with PKU, restaurants are more accommodating to dietary issues, there is more vegan food readily available in chain restaurants and there are so many different options for prescription food.
Believe me when I say though, you definitely aren’t alone in wanting to just eat everything and anything! Most PKU adults have been through what you are going through at some point. None of us are perfect, there is no perfect follower of the diet, no matter what we portray online.
You know your diet better than anyone. Feel confident that you can explain it and be open & honest with your friends. You will know the good ones from the bad ones quickly with how they accommodate your needs. You’re going to make mistakes, you might cheat on your diet, but that doesn’t mean you’ve let yourself down or it’s the end of the world. it’s important we learn from our mistakes and try to do better, even if it means learning the hard way.
We also now have the wide world of social media! If you don’t feel you can be honest with your parents, or your friends, then reach out to the PKU community! This diet is hard work, and no one should have to face it alone – no matter what stage of their life they are at!