opening up

opening up

Avatar of Pete

opening up


August 11, 2010 in Uncategorized

Well, I am opening up a bit about PKU. I was at an event in Clearwater Beach, FL on Saturday 8/7/10 and met people with PKU for the first time in my life. We sat at a table with a boy who is my daughter's age and has PKU as well as a man my age with PKU. I spoke with all but one of the speakers and they treated me as an adult, as a normal person, not as a freak. That is what keeps me from opening up most of the time. Felt like a FREAK... When I was a young boy I hid PKU from people. I was "allergic to milk" as far as most people knew. When I used that line in college the typical response was, "so you're lactose intolerant?" That became annoying, but not because the people were insensitive, but because it was not what the problem was. When I was just about 4, I told a waitress that I was on "a special diet" and could not have anything with meat. My dad's wife (my stepmother at the time) was apparently embarrassed and said (angrily), "You are NOT on a special diet! Don't say that!" I felt like a fool. I was a bit hurt by that, and it shaped me in a way that was part of the foundation to my feeling isolated and freakish about PKU. Looking back, I understand that she did not really mean to hurt me. I harbor no ill-will. PKU is way out of the ordinary. Over time I became a person who would not share the freakishness of PKU with others. I hid the fact that I was on "formula" (a word I despise even now) and minimized the inability to have meat or milk products. So deep was this freakish feeling, that I was convinced that I would not live past 20. No one ever told me that, I just developed that idea over my growing years. Fortunately, by the time I was 11 or 12 I was on a "normal" diet except for dairy products. By the time I was 13 or 14 I was not very concerned about dying before I was 20. Since I am now more than twice 20 (though I began to count backwards at 39, so I am actually 36 by my count), I do not worry about reaching my 20th birthday anymore. PKU Event Helped... Going to the PKU event, "What's Really New with PKU," I remembered a lot of my experiences. It also revived my idea to write a book about PKU- called Living With the Enemy. We will see what happens with that once I am under treatment for PKU again- starting tomorrow! I have too many ADD-like symptoms to complete a book at this point. The best I can do is about a 10 page essay (and that is a major task). Please let me know if you read this and can relate; cannot relate; still think I am a major freak or just think my writing abilities preclude me from publishing a book. Thanks!

7 Reviews of opening up

  1. Registered: Apr 24, 2009

    Posts: 0

    Cornwall, New York

    Hi.. Welcome to this site! My name is Katie, I am 25 and have PKU too. First of all, go you for coming on here and opening up about PKU. I really think this website is a fantastic resource for PKUers to open up and not feel judged for how they feel. I think many of us go through the same hardships with diet and deal with similar emotions having the PKU diet. What is important though is to realize we are “normal people” who just follow a restricted diet. There are many other people other than those with PKU who have to follow a restricted diet for various reasons such as diabetes, gluten free, etc.

    I think it would be awesome for your to write a book. Based on your blog, I find it hard to believe you have not been on diet for so long. You are actually quite a good writer. I think it is a great goal to write a book for helping you start and maintain your diet. You will feel those ADD-like symptoms improve as you start back on diet.

    I hate the word “formula” sometimes too. Usually I saw it is a protein shake of some sort. I used to hate talking about my diet, but now that I am following it well, I do not hesitate to share with people. Usually it is not part of my initial conversation when meeting a person, but I do share it fairly soon. I find it easier to just tell them and get it over with. PKU is not all me, but a huge part and I think it is important for my friends and family to know and be educated about it. Unfortunately, too many people have no idea about it. I think it is so important for people to know just because you do have PKU you can lead a very successful and happy life.

    I look forward to seeing more of your blogs on here. Hang in there. I have no doubt that you can get back on diet. Use this website as an encouragement for yourself. Share the hardships you go through. Maybe someone on here experienced it and can give you some advice.

    Again, good for you for opening up and joining the website! Follow your dream to write that book. I promise I will buy it and read it :)

    Another new PKU friend,
    Katie, NY, 25

  2. Registered: May 27, 2009

    Posts: 0

    , Florida

    Thank you Katie! I appreciate your comments and the welcome. I am intending to use this site more frequently and to encourage others to do so as well. I love and identify with your statement: “PKU is not all me, but a huge part…” Excellent. Thanks again!

  3. Registered: Apr 24, 2009

    Posts: 0

    Cornwall, New York

    anytime :)

  4. Registered: Apr 13, 2010

    Posts: 0

    plant city, Florida

    my family was at that meeting to! our 6month onld son has PKU! hes is just amazing:)

  5. Registered: May 27, 2009

    Posts: 0

    , Florida

    I think PKU was much scarier when I was a kid, much less was known and there were fewer options for food and “formula.” Your son is even more fortunate than we were because he will benefit from so much more research that was done.

    Where do y’all live? Around the Tampa Bay area?

  6. Registered: Jul 1, 2011

    Posts: 0

    sheridan, Indiana

    Hi my name is Katrina and I’m 39 and I have pku too. You were never a freak! Whether you felt like you were or not. You probably didn’t know how you felt about it yourself and so therefor you didn’t know how to address it with others. I never thought I was a freak or weird I always knew it was part of what makes me ME. Yes, its an ongoing struggle for me to try to be on diet. I try not to look at it in a bad or negative way. I also have some ADD tendencies but I try not to let it determine how I feel about myself. I prefer to think God made us all special for a reason and though I’m not sure what exactly that is yet I am trying to help support those who need it.

  7. Registered: May 27, 2009

    Posts: 0

    , Florida

    Thank you KLMT13, I appreciate your perspective. I am actually thankful that I grew up with PKU. I know that PKU did not make me a freak, and appreciate your comments on that as well. I did not always feel that way and my post covers those feelings. My diet struggles have been worse since Thanksgiving.

    Hang in there and, please, keep in touch.

Add Comment Register


Your email address will not be published. Required fields are marked *

Comment *

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <strike> <strong>

Processing your request, Please wait....


Quick Poll
Which of the following best describes you?
Parent/caregiver of an infant with PKU
Parent/caregiver of a child with PKU
Teenager with PKU
Adult with PKU
Grandparent of a child with PKU
Know someone with PKU
Healthcare professional