How to Explain Your Metabolic Disorder to Friends

Friends are so important to have in your life. Deciding to tell people that you have an inborn error of metabolism – such as phenylketonuria (PKU), maple syrup urine disease (MSUD), homocystinuria (HCU), or another condition – is a personal decision. We’re here to help if you feel like opening up to your friends about your metabolic disorder.

Always follow what feels right for you. Remember that true friends appreciate you for YOU.

New friends might not be able to tell that you have a metabolic disorder. They may, however, notice your special low protein diet and ask questions. Finding ways to explain your condition and diet can help you adjust to new situations and create authentic friendships.

Here are a handful of tips to consider BEFORE speaking with your friend:

  • Consider who you want to talk to. Is it your very best friend who keeps asking you questions about your diet? Or maybe you play on a sports team, and you’d like to tell your closest teammates at the same time?
  • In general, PKU and other inborn errors of metabolism are challenging to understand at first. Set aside a dedicated, quiet time to open up with your friend. They may have many questions for you once you start talking.

DURING your open, honest conversation about your condition, here are some phrases you may find useful to help your friend understand and relate to your disorder:

  • “My [PKU/ HCU/ MSUD/ your inborn error of metabolism] is a genetic condition, and I was born with it. Don’t worry – it is not contagious.”
  • “To be as simple as possible, people like me with [PKU/ HCU/ MSUD/ your inborn error of metabolism] cannot break down protein that is present in foods the same way you can. That’s why I need to follow my special low-in-protein diet.”
    • If they’re curious for more, you may add: “My body cannot break down a certain amino acid(s), the building blocks of protein. The amino acid(s) that my body cannot break down is found in all foods containing protein, and that’s why I need to follow my special low-in-protein diet.”
    • NOTE: If you have questions about which amino acid or amino acids your body cannot fully break down or have specific questions about how to explain your condition, talk to your metabolic healthcare team.
  • “I will not outgrow [PKU/ HCU/ MSUD your inborn error of metabolism].”

DURING the conversation, your special diet & formula may come up as an important or confusing aspect of your condition. Here are some things you may want to tell your friend:

  • “It’s really important that I follow my low protein diet because otherwise, substances can build up in my body that are harmful to me. My body cannot break down protein the way most people can.”
  • “I can’t have a ‘cheat day.’ Having excess protein is damaging for me and my body, even if you don’t see it right away. Not following my diet could lead to negative, serious health effects for me.”
  • “To help me get the nutrition I need, I drink a special formula that’s made for [PKU/HCU/ MSUD/ your inborn error of metabolism]. It’s very important for me to drink my formula.”
  • “I drink my formula daily, and you may have seen me making it.” (Add what is true to your situation!)

AFTER the conversation: If you feel comfortable asking your friend for support:

  • “Now that you know a little more, could you support me when I drink my formula in front of you (or other people)? And would you support me when I order what may seem ‘weird’ when we’re out together, like just ordering French fries or a plain salad?”
3 teenage male friends hanging out in their room looking at phones

To give your friends more perspectives and help them better understand your metabolic disorder, consider sending them to our YouTube page where we feature stories of people like you on low protein diets!

Reference Source: Inspired by and adapted from My PKU Binder. National PKU Alliance. Chapter 7: Ages 13-17, Page

The information provided in this blog is for informational purposes only and is in no way intended to replace the advice, care, and medical supervision of your metabolic team. Always consult your metabolic healthcare professional team before making any changes to your diet or condition management.

© 2021 Nutricia North America

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