When Your Favorite Thing to Do Is Eat, But Your Illness Makes It Difficult


I used to love eating dinner out somewhere. I love food. Food is the best thing about being near a city. I always had a dietary restriction, but I could be looser with it. I could opt for that bowl of ice cream and skip the pizza.

But this summer brought sweeping me new changes. Suddenly, because of abetalipoproteinemia, my liver function values sky rocketed. They almost tripled in the span of three months. I was told cut the fat.

No more cheating. No more opting for a bowl of ice cream and skipping the pizza the next day. Now it was suddenly skip the ice cream and the pizza.

Knowing I wouldn’t be able to travel much longer as my disorder progresses, we went touring the National Parks of the US. It was the best vacation of my life and worth every extra ache and pain. Except one of my favorite things to do while traveling I could no longer do — I could no longer eat out. Suddenly having to watch every gram of fat was exhausting. Google became my best friend, I’d Google any place we’d think about stopping to eat.

Was there anything on the menu I could eat? More often than not, no. And there’s only so much grilled chicken I can have a week. Eating out became a hassle. Fat is hiding everywhere.

I’m learning to adapt, though. I’m no longer afraid to ask for them to cook grilled chicken plain, or just a steak no butter or oil.

You never realize how much cultural identity is tied to food until you can’t eat half your culture’s foods. 

I still mourn the loss of salmon nigiri and a nice bowl if ice cream, but it no longer works. Being sick all the time means you become adept at adapting.

My advice to those struggling to enjoy eating out while watching what they eat is to find the places you can eat, do your research ahead of time and don’t be afraid to ask. You’re stronger than you think.


Find this story helpful? Share it with someone you care about.


Related to Rare Disease

Family silhouettes in nature.

To the Parents Starting Their Journey Into the World of Rare Disease

I’ll never forget the first time a medical professional told me something may be wrong with my then 2-year-old. He said, “Not all kids are athletes or Olympians, but they learn to compensate in other areas.” This was undoubtedly an odd way of starting the conversation that my child needed to see a neurologist because [...]
little boy in a hospital bed with a service dog

What This Non-Supermom and You Have in Common

My journey through motherhood has been a long one, beginning long before my son was born. After going through years of fertility treatments, five miscarriages, and a difficult pregnancy, I was blessed with my son Giovanni. From the moment he was born, life became filled with challenges we never expected we would have to face. But seriously, who [...]
The Hardest Parts of Having a Rare Disease, picture of patient and doctor's hands

The Hardest Parts of Having a Rare Disease

There are more than 7,000 identified rare diseases worldwide. Global Genes, one of the leading patient advocacy organizations for rare disease, estimates that “nearly 95 percent of all rare diseases do not have a single FDA-approved drug treatment.” With grim statistics like this, it is certainly not easy living with or having a loved one [...]
Michelle Campbell's son.

When My Son's ‘Long Case’ Brought a Medical Resident to Tears

As we sit staring blankly at the monitors, there is a subtle, apologetic knock on the door. A sweet, polite face appears at the entrance to the  hospital room. She introduces herself. She is a young doctor in the final leg of her post-graduate studies, only months from realizing her dream of becoming a pediatrician. [...]