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Living with PKU can bring its own worries, stressors, and can make you shy away from others in fear of judgement. However, it is important to remember that PKU shouldn’t be hidden under the carpet and in fact should be embraced as part of your personality. The more you learn to accept PKU as a unique part of you the more you will see the positive side to not only the low-protein diet, but the community as a whole and where it may lead you.

by Annie Skidmore

Keep up your self-esteem

PKU can reduce your confidence in social settings as well as on holidays or away from home, due to fear of not sticking to the diet or being unable to have certain things. However, the more you prepare for and go out to social events the more confidence you will get in these settings. You will know what works for you and what things are best for you to have or bring – and at the end of the day the easier it will be in the long run.  

Being able to talk with friends and family about your worries will also help to improve your self-esteem and confidence when dealing with PKU. Start with those closest to you who understand PKU the most, confide in them, and share your feelings – they will be sure to help you be prepared and feel more positive about your PKU. They may help you explain PKU to others or voice your concerns about a specific social event you may be going to in which they could provide some advice to help you feel more relaxed. 

Each time you go out or do something new be proud of this achievement for some it might only be going out to a restaurant with friends and have the confidence to either bring your own low-protein food e.g., pasta for them to cook or have something suitable on the menu. For others it might be preparing to go away on a dream holiday they’ve had planned but feared going on due to having PKU. Whatever it is remember each time will get easier and the more your confidence and self-esteem will improve.

It is important to remember not everyone with PKU will have the same worries all the time, some will be more experienced in travelling and going out with PKU and others will be at the early stages worrying about how they will cope at school and in education with PKU (see previous articles for guidance on these). However, at some point all of us will be less confident in certain situations and fear the unknown – this is completely normal and will become easier as time goes on and you learn from past experiences and others (trust me!).

So next time you start doubting yourself or worrying about what others think remember you have been given this PKU life because you are strong enough to live with it. Embrace your individuality and remember how lucky you are. There will be ups and downs along the way but the more you embrace PKU and go out of your comfort zone, the happier and more confident you will become – so stick with it and go have some fun!

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