I was browsing on some Phenylketonuria Facebook groups, looking for inspiration, when I came across that question: what is the worst thing you’ve been told about phenylketonuria? I can tell you that all kinds of things came out, funny and less funny! But one answer in particular interested me.
« Your phenylalanine levels must be high because your attitude sucks. »
The comment was followed by some responses from other members who have also heard a similar sentence. Let’s not forget that it is true that high levels of phenylalanine have a definite impact on emotions, patience and anxiety with PKUers.
From an individual point of view, what I find interesting now that I follow my diet strictly is that when I deviate, I can feel these differences in patience and emotion. I am more aware and that’s fine! It is extremely encouraging that we can know the difference and it motivates us to get back on track very quickly.
So I fully understand that people who are well aware of the symptoms of a poorly monitored diet may be asking this question.
The problem is when this question is used as an argument in a discussion and it becomes so common that many people write it as a comment on Facebook. I also know from experience that this is not limited to phenylketonuria. I have already heard other people say that, as a result of difficult psychological episodes, such comments were used to point out a negative attitude.
However, everyone has a different level of patience and everyone has the right to be in a bad mood or have a negative attitude from time to time, phenylketonuria or not. The context of the situation that a person goes through is much more important. The diet is hard to follow. When a PKUer is told that their levels are high only on the pretext that they are in a bad mood while they are fighting to try to maintain good levels… it can be annoying.
Everyone can be in a bad mood once in a while, but not everyone has phenylketonuria. 🙂