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What Hunger Actually Feels Like With Prader-Willi Syndrome

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When I hear people say “I’m absolutely starving,” “I feel like I could eat an entire ___” or the ever so popular “I’m hangry,” it makes me twitch a little inside.

The reason? For those who have Prader-Willi syndrome (PWS), such as myself, we feel hunger in a painful and never-ending way.

There’s been times where I’ve had to hold my tongue, when all I wanted to do was tell people with a frustrated tone in my voice, that they don’t know what hunger feels like. However, that’s just not appropriate or accurate. Obviously, everyone all around the world knows the feeling. There are many individuals who don’t have the proper resources for food. After all, it’s not my place to take away others’ feelings, nor would I ever want to.

A small part of me would love for some to understand what it’s like to eat and be starving not even an hour later. Or to be fast asleep and be rudely awoken by piercing hunger pains. To have to face this hunger every day, and constantly choose to be stronger than the starving sensation. To know that the never-ending hunger could be the deadliest thing for an individual like me.

And the real kicker here? This feeling starts when people with PWS are young and it just gets worse as they get older. You could say the feeling manifests over time. Then, we have to deal with knowing we aren’t actually hungry, it’s just that our brains are wonky, and giving us the wrong signals.

The troubling part of all of this is there’s not much we can do about it just yet. There’s preliminary actions that can be made, but nothing will ever subside the hunger. Each and every day is a learning curve.

I can without a doubt tell you that hunger is one of my must frustrating struggles these days. Thankfully, thanks to the help of my specialist, I participate in Weight Watchers. Food has always been and will always be an uncomfortable topic for me.

However, each and every day I’m trying.
I’m just learning and getting stronger as I go.

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Originally published: January 8, 2020
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