It's okay to not feel okay about your PKU sometimes

Apologies for my long absence, it’s been a hectic few months with Christmas and deadlines (and more deadlines)…

I was initially a little hesitant when deciding whether to write this piece or not because I am generally trying to promote a positive outlook on PKU, but I guess it wouldn’t be realistic for me to be happy all of the time and unfortunately it’s just a part of life I guess – you’re not always going to feel okay about having PKU and that is fine. I have definitely experienced these feelings (although I am again, referring to when I was a lot younger). Also, the things that I have written about here are really personal to me, so I felt a little nervous about sharing them.

Although I am usually quite positive when it comes to my PKU, I won’t deny that there have been a few times in the past where I’ve felt a bit fed up and just frustrated at the whole situation. I am quite a shy person who struggles in most social situations, and if I’m being honest I really think that having PKU has only worsened this for me. I am not saying that PKU is the sole cause of me feeling this way, but it has certainly not helped me in any way.

Other than experiencing many an anxious dinner time at school or just when eating out in general, there is one particular time which stands out to me where I felt a bit down about my diet. I was at my dance school on my break, stood drinking my supplement (which at the time was the Cooler), and I just vividly remember someone commenting on how bad it smelt and then I think they proceeded to ask me what it was that I was drinking, which was always the most awkward question for me. Now, I’ll admit those drinks were definitely not the most pleasant smelling things in the world, but honestly - try drinking them! I remember how upset I felt over this little comment, which probably wasn’t said to intentionally hurt me, but still it did, and it has stuck with me all these years later. (Also the fact that I’m quite a sensitive person probably didn’t help). Reflecting back now though, it’s something which seems so silly and insignificant to me. Yet, these are the real feelings of someone with PKU.

No other specific time comes to mind, but I definitely recall a general feeling of sadness at times, over not being able to just be so careless with food. When you’re living each and every day on a strict diet it can become repetitive and you just begin to get a bit sick and tired of it all. (I’m sure that even people who don’t have PKU, but who just diet out of personal choice, will be able to relate to what I’m saying). But the difference is, unfortunately people with PKU don’t have a choice about it.

Whilst PKU is not something that I will ever be fully free of, I’ve realised that I could be so much worse off and it is honestly so important to remember this. Yes, it is okay to sometimes feel upset or down about having to constantly monitor what you eat, or not being able to join in the same way as everyone else. But there is always a way around this. I remember when I was younger my Nanna used to bake me low- protein cake so that I didn’t have to miss out at birthday parties… But really, it is not the end of the world. It is like everything in life – you just have to learn to deal with what you are handed.

So to end this on a happy note – you can still achieve great things in life even with PKU, it should not be a barrier. For me personally, I never imagined myself at university dealing with my diet independently, yet this is my third year of successfully doing so.