Managing PKU can be a bit of a burden. It is difficult to stick to such a restrictive diet and you can so often feel left out and lonely. Very few people can truly ‘know your struggle’, even those you are closest to.
Well, I am here to tell you that it isn’t as bleak as the above paragraph makes things sound. It completely depends on how you choose to view things. PKU is rare, meaning that you’re unique, and special, and when you meet others with it, you have a truly genuine connection.
The main way I manage my PKU, besides doing my best to stick to the low-protein diet, is by trying to look at all the positive things my PKU has brought to me.
My brother and I share this condition, and so, we have a special connection because of it. Even into adulthood, as we have grown apart in our life stages, we can still hop on the phone, and talk for half an hour or more, and the conversation will almost always include a talk about our diet or formula.
I surround myself with friends who may not always “get it” but who do their best, and genuinely enjoy being with me and my special quirks! It is especially wonderful when I am invited out for dinner and the host has gone out of their way to ensure there are things I can eat
Last of all, I have a greater understanding of balance than I think many others do, nutritionally, physically and spiritually because so much of my well-being throughout my life is dependent on it.
I encourage you to find and write down what positive things PKU has brought to your life, and let those positive things feed your possible.”
