Taking Control: What I’ve Learned from Having PKU

By Elisa S., http://meupku.wordpress.com/

“This isn’t fair! I hate this! It’s not my fault!”

We’ve all felt this way at some time or another. Believe me, I’ve been tempted to feel this way as well.

I have phenylketonuria or PKU, a rare metabolic disorder, which means my body can’t metabolize one of the amino acids in protein. Because of this, if I were to eat a normal amount of protein there would be a build up of this amino acid, phenylalanine, in my blood. This would cause brain damage and cognitive/emotional problems.

Fortunately, just a few decades before I was born it was discovered that being on a low-protein diet for life can prevent this brain damage and people with PKU can have normal healthy lives.

What this means for me is that I can’t eat meat or eggs or nuts or even cheese or pasta. I have never eaten a hamburger in my life!

Also, in order to get the protein and other nutrients I need I have to drink 32 oz. of a not-so-delicious-tasting formula every day.


Me with the formula I drink every day

Now, before you start feeling sorry for me you should know that I am totally used to this and I have no problem with it. I have accepted PKU as the way my life is.

Following the diet has allowed me to do everything I want to do in life. Being grateful for my situation has allowed me to be content. Helping others who have PKU gives me deep fulfillment and satisfaction.

You may have a different challenge in your life than PKU, but we all have challenges outside our control. What we can control is how we react to them.

Choosing Not to Be a Victim

Complaining and giving up is one way to look at an undesirable situation. But it really doesn’t help you. If that is your outlook you are making yourself a victim of your circumstances. You are giving away your power to things that are outside of your control.

Don’t be a victim.

It may seem at times that the only way to get attention is to say something negative. I’ve even noticed that sometimes people who don’t know what to say to each other just complain about something and then they feel like they connect with a shared negative feeling. That type of connection isn’t very deep and doesn’t lead to genuine friendships. The truth is, everyone really likes being around a person who is positive and outward focused (meaning aware of those around them).

Because PKU is a genetic disorder with no cure, there is literally nothing I can do to change it. If I went around hating that I had PKU every day, I would be pretty miserable.

But I can choose my attitude. I can choose to stick to the diet that keeps my mind and body healthy. And I can choose to enjoy the foods I can eat, to be so grateful that I was born after treatment for this disorder was discovered, and to reach out to others who have it and try to help them embrace it as well.

Locus of Control

In psychology there is a term called locus of control. If you have a high outer locus of control you feel that most of your success, happiness, failure, or disappointment comes from circumstances outside of your control. This is being a victim. This leaves you at the mercy of what happens to you.

Having a strong inward locus of control means you believe your choices and attitude determines what your life is like. This is empowering.

I was diagnosed with PKU as a baby, so I wasn’t exactly thinking about locus of control at that point. But as I’ve grown up I’ve realized that this attitude has really made a difference in my life and that it can apply to other situations in life as well.

Acceptance and Taking Control of Your Life

Whenever you feel stressed or upset it may help to pause and consider these questions.

  • What am I feeling?
  • Why am I feeling this way?
  • What can I do about it?

First you need to figure out what you’re actually feeling. Sometimes we get so busy we don’t have time to pause and think or realize how our feelings are affecting our behavior. This may cause us to take out our stress on those around us or place unfair blame on them.

Once you’ve identified the feeling, determine why you are feeling that way. It may be a conversation at work that didn’t go very well, or an expectation you had that was disappointed.

The last step is the most empowering. Once you’ve identified the cause of your feeling, you need to see what you can do about it.

Chances are there are both factors that are within your control and factors that are not. Maybe you could have explained yourself better to your boss, or your expectation could have been more realistic. On the other hand, maybe your boss’s personality just doesn’t click with yours and you’re going to have to accept that.

The key is to accept the things that are not in your control, and work on the things that you can improve. This frees you from being a victim. This helps you gain control of your life.

My experience embracing PKU has taught me that practicing acceptance and developing your inner locus of control will build your self-confidence. Your positive outlook on life will make people like being around you and will help them be more positive as well. And that is what TRU beauty is all about.

Elisa is a full-time mom of one so far. She sings and teaches piano lessons, and she enjoys watching National Geographic documentaries with her husband and being outdoors. She blogs at http://meupku.wordpress.com/.


One thought on “Taking Control: What I’ve Learned from Having PKU

  1. Pingback: PKU and Taking Control of Your Life | Me, You and PKU

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s