What It’s Like to Be Known as “The One With FH”

Having familial hypercholesterolemia (FH) can feel like wearing a badge I never asked for. People get to know me as the "health nut," or the person who’s always reading ingredient labels. And while I’m totally fine with prioritizing my health, there are definitely ups and downs to being "the one with FH."

Being the support person I needed when I was diagnosed

One of the best things about being open about my FH is that it’s made me a go-to resource for others. Recently, my best friend’s husband was diagnosed with FH, and she turned to me for guidance. I’ve been able to share my experiences, offer advice, and just be a listening ear when things feel overwhelming for them. Honestly, it feels really good to help someone navigate what can be a pretty scary diagnosis.

Through my advocacy work online (like writing articles like this!), I've had many strangers find me on social media and ask for advice. Often, these people are younger than me, and it feels very rewarding to be able to be the person I needed when I was their age and navigating this diagnosis on my own.

Holding myself accountable

Being known for having FH also pushes me to stay informed and proactive about my health. I’ve learned so much about nutrition, exercise, and managing my condition that it’s become second nature.

It’s almost like having FH has given me this built-in accountability system to keep making good choices — and sometimes that’s exactly the motivation I need.

Feeling left out

But then there are the moments that sting a little. Like when coworkers don’t ask me to join them for lunch because they’re going somewhere with mostly greasy, fried options. I totally get it —they’re probably trying to be considerate — but it’s hard not to feel left out. I’d rather be invited and decide for myself whether I want to go or not.

Besides, I’m pretty good at finding something that works for me on almost any menu (even if it means asking for a salad with the dressing on the side).

Having my food choices policed

There’s also the subtle pressure of always "being good." People notice if I’m eating something indulgent, and I’ll hear comments like, "I thought you couldn’t have that!" or "Wow, you’re cheating today?" It’s exhausting to feel like my food choices are constantly being policed. Sometimes I just want to enjoy a treat without it being a big deal.

FH is part of who I am

Living with FH has definitely shaped how people see me, but I’ve come to terms with that. I try to embrace the positives — like being someone others can look up to for health advice or lean on for support — while not letting the negatives weigh me down too much.

If coworkers don’t invite me out, I make an effort to suggest a different spot next time or plan my own hangouts. And when someone comments on what I’m eating, I’ve learned to smile and say, "I’ve got this under control."

Having FH isn’t always easy, but it’s part of who I am. And while I didn’t choose this role, I’m proud of how I’ve grown into it. At the end of the day, being "the one with FH" is just another way of saying I’m someone who cares about their health and isn’t afraid to take charge of it.