“Growing up with an Inherited Metabolic Disorder can be challenging at times – you can’t always enjoy even the simplest of things in the same way as everyone else. When I think back to what it was like for me growing up with Phenylketonuria (PKU), holidays such as Easter and Christmas stand out in my mind as being some of the most challenging times. They sometimes felt complicated and filled with worry. Although my condition is now much more manageable in my adulthood, this hasn’t always been the case. I have certainly experienced many Christmases feeling awkward at parties and missing out on exciting festive foods. Still, my family have always made an effort to make me feel included in the Christmas celebrations in some way or another.
My earliest childhood memories of Christmas include a cross-stitched advent calendar, which my auntie made for me. As an alternative to the usual chocolate advent calendar, my parents used to fill mine with protein-free sweets. I found, as most young children do (and even as an adult now), having an advent calendar with which to count down to the special day was one of the best parts of Christmas – I’m so glad I’ve always been able to take part in this tradition.
My parents had to take extra care when planning my meals around this time, particularly if we were going to a family or friend’s party, so that I had enough of my protein allowance left over for a Christmas treat, or so I could indulge a bit more in the buffet food. Although, this didn’t always go to plan. The tradition was that I spent Boxing Day with my dad. Then later that evening, I would go with my mum to my aunt and uncle’s house. My mum would always tell me to save some of my protein allowance for the evening, but there were a few times when I returned with less than we had planned. Unfortunately, on those occasions, I had to miss out. However, my parents were very considerate and never ate anything which I couldn’t have in front of me – I didn’t realise this until recently when I was reminiscing about past Christmases with them – I’m so grateful that they did this but I also feel a little guilty because it meant they had to miss out too!
Despite me missing out on some of the exciting food, I always had my own low-protein food on which to rely. But, as I got older, I began to feel more embarrassed and awkward about taking this with me. I began to notice that it didn’t quite look the same as everyone else’s. I felt so self-conscious and anxious, especially if I was around people that I’d not met before because I knew questions were bound to be asked.
When it came to my Christmas dinner, I always enjoyed filling up on a variety of vegetables, or sometimes my mum would bake me a delicious vegetable pie (this is what I still do now). Christmas dinner can be whatever you make it. You don’t always have to stick to traditions. As long as you are happy and having fun, that’s all that matters.
I’ve come to realise that whether you have PKU like me or another similar metabolic condition, you shouldn’t let it stress you out too much and you certainly shouldn’t let it stop you from having a wonderful Christmas!”
Thank you to Chloe for sharing your experiences of Christmas with us. We hope you and your family have a magical Christmas this year!
If you would like to share your story or experiences of living with an Inherited Metabolic Disorder, please contact Maggie on firstname.lastname@example.org or 0845 241 2173. We look forward to hearing from you!