Hello everyone, my name is Clair Willcocks, I am 27 years old and I am Galen Medical Nutrition’s new PKU blogger. I am an adult with PKU and I was diagnosed with Classical PKU 8 days after birth. I am on 5 exchanges of protein a day and currently taking the PKU EASY Microtabs substitute 6 times a day.
Meeting new people is always a nervous time in our lives, whether it’s when we are starting a new job, hobby or mixing with a new set of friends. This gets even more complicated when PKU is involved. Even though it massively impacts our lives, on the outside there are no clear indications or symptoms, and you certainly wouldn’t be able to pick a person with PKU out of a crowd.
You would think an obvious give-away would be with our food, but in an office environment for example at my work, as well as doing my job, I do end up just having lunch at my desk, along with snacks and tea or coffee. Other people are too focused on their work (or more importantly their own food) to really care about what anyone else is eating. With PKU not being obvious, it’s hard to know when it’s best to bring it up around the workplace, without it being strange or sounding attention seeking, so you just leave it and hope no one notices. Before you know it though, the work Christmas meal is being organised and you are being asked by the office manager what meat option you would prefer at the meal!
When I was younger it was of course much easier, as my parents would be the ones explaining my PKU to my teachers, or whoever was looking after me. As an adult, it can be really hard finding that right moment to say it to colleagues, especially in a situation such as starting a new job. I don’t like to just declare it one day for all to hear, because I’m always worried it can come across as attention seeking, like saying ‘look at me, I have a rare metabolic condition’. I’ve found that the biggest give-away is usually the medication, or the supplements that I now take 6 times a day (4 of those during office hours).
Even when people are focused on work, they soon start to notice me shaking my drinks or swallowing a handful of tablets and I can see the cogs turning of my colleagues, realising that maybe something might be different about me. The good news is though, that personally, I have found that people 99.9% of the time tend to be genuinely really interested in hearing about PKU!
Food is an important part of the human experience and so when people hear about PKU they always find it fascinating and want to know more. Even though it can make me feel a bit like a bug under a microscope, I’ve found the best way to deal with it is to just have fun with it! Through my experience of starting new jobs, the easiest way of introducing it to new people is to let them make the first observations and ask the first questions. Below is usually how a typical conversation goes:
As I’ve said previously, the first question tends to be about the supplement. e.g. “What is that stuff you keep drinking? Why does it smell weird? What are those tablets for? Why do you need so many?” For this first question, I tend to keep my answer just at the basic fact level.
I like to say “I have a metabolic condition called PKU which means I am unable to process protein, so I have this supplement to give me the protein I need.” I know some people like to say it’s an allergy because it’s easier for people to understand, as when it comes to food they already understand allergies, but if this is new a job or potentially a new friendship/relationship, I just think it’s so much easier just to be clear from the first question, as it saves later confusion and question like “so if you’re allergic to protein how come you can have chips and you don’t have a reaction?”
Also, people now tend to be more aware of food and nutrition in general so they may be already more clued in on metabolism, protein, and enzymes than you think! The only time I’ll use the allergy reason is if I’m in a bar or a restaurant and I don’t want to explain my life story to a waiter that I’ll never meet again. The quick and simple answer in this situation as to why I want full fat soft drink rather than a diet one or why I can’t have cheese, so they take me seriously and don’t think I’m just being picky is, “it’s an allergy.”
“What does PKU actually mean?”
So, you’ve told them about PKU, their interest has piqued, and then they make the connection between the word ‘protein’ and how that relates to food. The next question tends to be: “So if you can’t eat protein, what can you eat?”
This is where easy examples are your friend, I think it helps others be able to relate and understand PKU better. If you go too deep into the breakdown of the diet and say for example, “I can only have 5 exchanges of protein, I have to weigh out what protein I eat in my cereal and potatoes, 80g of potato is 1g of protein” it just gets very confusing very quickly.
What I have ready instead is 3 or 4 simple examples that helps people understand how much protein is in normal food, so I will say ‘1 packet of hula hoops is 1g of protein, a large egg is 4g of protein, a big mac from McDonalds is 30g of protein” I then like to pause for dramatic effect and say “And I am only allowed 3g of protein a day!”
This is my favourite part of the conversation, the sudden realisation on their face of how much protein I can’t eat and again, I have to be ready for the questions that are about to come my way.
Here are a few examples of questions I have had:
Once you’ve gone through the list of cans and can’ts, it’s usually the next day when they’ve had time to think about it, they’ll say “so what can you have?!” I simply explain I can have fruit, vegetables, and sugary items freely and I get natural protein from potatoes and some higher protein vegetables. Depending on how comfortable I feel, I may also mention that I get my carbohydrate-based foods on prescription.
“What happens if you do eat meat?”
This is a tricky question because the fighter inside us all doesn’t want to seem like a victim or seem over dramatic for sympathy, but again I think it’s best to be honest so people can take PKU seriously, as PKU is serious. I say if I have too much protein over a long period of time it will build up in my brain and I will get brain damage. If you’re feeling spicy and someone straight out asks, being rather insensitive and stupid (as people can be), “so if you have meat, will you die?” I tend to say “no I just get brain damage and my body slowly but surely falls apart.” That usually shuts people up!
I’ve been at my current workplace for over 3 years now and I still get the odd question, the conversation when we order McDonalds about how much protein is in this and that and as I’ve said before, I think the best way to be is honest, open and to treat it as a fun quiz, because people’s reactions are always so funny when it comes to their favourite food.
Don’t be scared about judgement, PKU is a part of your life, but it isn’t a part of who you are as a person. It’s not a weakness or a freak oddity, it’s just something that’s in your life and eventually people do just get bored of hearing about it and go about their day like nothing has happened!
To help with the phobia of talking to people about PKU and worrying about what people may think I asked my in-laws, friends and colleagues this question.
“What was the first thing you thought when I told you I had PKU?”
“I didn’t really care! But I was interested to know what would happen if you did eat protein”
“I just thought if you can’t have protein how much that would suck because you can’t eat anything, as pretty much everything has protein in it”
“I wondered what is PKU and how it affects your life.”
“I had no idea what it is, I just wanted you to explain it further so I knew what you couldn’t eat!”
“I was surprised and intrigued as I had never heard of PKU, even though I remember my sons having the heel prick test as babies. I wanted to ask a lot of questions to understand it but didn’t want to bombard you, as I didn’t know you very well then, and I wasn’t sure if you wanted to talk about it. I looked it up online, but found I had even more questions lol. I was concerned for you due to the consequences of not eating / taking meds properly, and I worried about getting it wrong when you stayed for dinners. I think I understand it more now as you have been so open about it and we have talked a lot about it. I’ll ask you anything now!”
“I had no idea what it was and when I heard about it, I remember thinking is it similar to my lactose intolerance where it’s limiting but it’s bearable? But then the more I got to learn I found out it can be really hard! Especially through adolescence and the social stigma of not being able to drink/eat something and being labelled a weirdo was definitely something I thought about. I remember thinking that it was so refreshing that you wanted to teach people rather than be super private, because how else can others learn and also raise awareness? I do remember tasting your potato drink at the stour centre after we’d been swimming and just thinking jeez…and Clair has to have this every day? I’ve always thought you never let it dictate where you were going and were always very positive, even when sometimes it was overwhelming.”
Look at all these answers, none of them have judgement, criticism, anger or disgust, they are sympathetic, fascinated or just flat out aren’t bothered (that one made me laugh!).
I think we are lucky at this time in our society, that more and more people have allergies or intolerances. Lots have also changed their diets for health reasons, such as the plant-based or vegan diet, so now PKU isn’t as much of the standout thing that it once was. And if people are rude to you or nasty about your PKU then clearly, they are the ones with the issue, not you.
Never be scared of being who you are, have fun and be honest! Whether we like it or not, PKU is a part of our everyday life and the more you can help people understand, the more they can help you. From my experience, my workplace and friends have always been great, and whenever we have a party, snacks, or a meal, they always make sure there’s suitable foods so I can feel included.
Date of preparation: December 2021