I can’t help but wonder: why isn’t it okay for people who have PKU to be normal? Now, before you get your underwear in a bunch please let me explain, because I am not trying to offend anyone. I am fully aware that PKU people ARE normal. I know that we are able to attend school, go to college, work a job, and start a family just like everyone else. However, sometimes it seems that more often than not when individuals living with PKU express ‘undesirable’ emotions or behavior everyone assumes it is due to their PKU.
You’re probably wondering what got me thinking about this right? Let me fill you in. A few days ago I was acting very silly with a group of friends. Anyone who knows me knows that this is not out of the ordinary. Someone who knew about my PKU, but was clearly not aware of my personality, commented that my phe levels must be high. To be honest I was extremely offended by this. I was not the only person acting like a goofball, and my silliness was not inappropriately timed. Not to mention I am almost 99% certain my levels were within the safe range of 2 to 6 mg/dl. So why is it that someone suddenly felt the need to explain my crazy behavior with a medical explanation, whereas other people can be silly without having their motives constantly put into question?
We encounter people who are grumpy, sad, tired, and overly excited everyday. A rough day or some bad news could easily cause negative emotions. Tiredness could be the result of a lack of sleep, and a large amount of excitement might be the result of an upcoming event. It is perfectly normal to feel these emotions. Even people who have PKU are entitled to bad days or a poor night of sleep. It is okay for people with PKU to have these normal behaviors! Having PKU does not make us immune to feeling emotions, even the ones that we wish we didn’t have, and not everything we do is caused by our PKU. Sometimes we are simply being normal, everyday people.
Time and time again I have heard parents of PKU children say ‘Little Susie is being so naughty. Her levels must be high!’ Now I am not saying that high phe levels do not have an effect on behavior. I am sure they do. BUT perhaps we need to consider that little Susie’s wildness is not always a side effect of PKU. Sometimes she is just being a child. Children don’t always listen, and regardless of what caused a child’s poor choices they still need to learn how to behave properly. They won’t learn how to survive in the world if they don’t. After all if I am late for work or disrespectful to my boss I cannot fix the situation by saying ‘sorry, my phe levels are high.’ Even if I am tired or irritable from high phe levels I have had to learn to adapt and compensate for my short comings so that I can do what I need to do. This is just my opinion, but I feel as if parents do their children a disservice by using PKU as a scapegoat, because honestly the world isn’t going to care if their phe levels are high.
Anyway, I apologize for turning this blog post into more of a rant. I got a little bit carried away. In the end it all comes down to the fact that I cannot stand when PKU is used as a scapegoat or explanation for someones behavior. We are human as well and can (and will!) have bad days and make less than brilliant decisions once in awhile. It’s a part of life, and it’s perfectly normal. It is okay to be normal!