By Annie Skidmore
Throughout my childhood and early adult life I have had to explain PKU and the associated challenges to a wide variety of people from school mates, teachers, lecturers and cooks to hotel and restaurant staff, airlines, passport security, event staff and of course family and friends. Therefore, I have both had the positive and negative experiences and can help you to become less anxious in explaining the diet to others. Over the years I’ve had people ask all sorts of questions including ‘You’ve never had KFC?’, ‘How do you survive?’ and ‘Can you drink water?’. The later was during my younger school days and thankfully we can! However, there have been some great people who have gone above and beyond to help me fit in and meet my needs whether this be in school, college, out in restaurants and even abroad! See my top tips to help you have a good experience and try to explain PKU clearly to others.
1. Start simple – don’t bombard people with facts, statistics, and complicated science. Start by saying you cannot break down protein so have to stick to a low-protein diet. Then explain how it is a genetic metabolic condition and not an allergy (this is key in restaurants) but causes long-term damage if it isn’t controlled. Maybe then explain how rare it is as the likely response to these will be ‘I’ve never heard of this before?’. The basics are important but do not need overcomplicating.
2. Explain what you can and can’t have – give examples of food you can have e.g., fruit, veg and salad then foods you cannot e.g., meat, eggs, fish, dairy, bread. State that most food has protein in it, but you can have a small amount of dietary protein which is individual based on your blood levels (i.e., how active your enzyme is).
3. Show them your supplement – explain how you still need all the vitamins and minerals you get from dietary protein and have an amino acid drink ‘x’ many times a day to meet these needs.
4. Don’t worry if they don’t get it right first time – for most people they will have never heard of the PKU diet, and it will take them a while to understand the ins and outs of it. They will likely still ask many questions of what you can and can’t eat but be patient they are only interested and trying to understand it better.
5. Trust your instinct – this relates to the point above as not everyone will get it right however, when in a restaurant, hotel or abroad it is important that you are eating the correct things and if you have any doubts about the ingredients or whether they have used the right low-protein pasta just ASK! It will provide you with reassurance and just double check because if they hadn’t you would be worried all day and for next time.
6. Be prepared for quirky questions and repeating yourself – as said previously it will take time for friends, family and relevant staff to understand PKU so this may mean explaining yourself more than once and answering a few unique questions – don’t worry or feel embarrassed this happens to the best of us!
So, next time you meet someone new or must explain PKU to restaurant staff make sure you remember my top tips and remember they are likely to me very interested not judgemental and will try to do their upmost best to suit your needs.