Narcolepsy and My Chaotic Relationship With Food

Living with narcolepsy means that I often struggle to take care of my basic needs. Naturally, narcolepsy has made my relationship with food difficult at times.

Overeating and weight gain impacted my self-esteem

When my narcolepsy first onset in my college years, I started gaining weight rapidly — I was so hungry all the time! With the onset of narcolepsy, my appetite significantly increased. This combination of exhaustion and extreme hunger made it easy to overeat. Sometimes I would wake up in the middle of the night, stomach growling, feeling like I was on the verge of starving. I’d get up from bed and go to the kitchen to binge eat until I felt like I could fall asleep again.

The weight gain that ensued from these habits around food really impacted my self-esteem. It didn’t help that the people around me at the time thought I was lazy for my sudden onset of narcolepsy symptoms. To the people around me, oversleeping and overeating were hallmarks of laziness. It was hard to not internalize those messages while struggling with this new invisible condition.

Stimulant medications and undereating

I tried stimulants on my journey to finding the right medications to treat my narcolepsy. These medications made me not want to eat all day, and then I would binge from extreme hunger as soon as they wore off! It was not great for my mental or physical health, but it beat living with narcolepsy without any medications to help at all.

Undereating, or not eating frequently enough, also impacts my energy levels. Since digesting food makes me sleepy, I sometimes avoid eating when I am trying to stay awake for events. However, I have learned that when I am not fueling my brain properly, it is not able to function at peak performance. That means that my narcolepsy symptoms become worse when I avoid eating for too long. My emotional reactions become more volatile. My sleepiness worsens.

Finding a balance with my eating habits

Now that I am on medications that help to treat my narcolepsy, I find that they also suppress my appetite to the point where it is now much more of a "normal" appetite. I rarely have the extreme bouts of hunger that I remember having when living with narcolepsy unmedicated. It was a relief to find the medication combination that works for me.

Now that my appetite is under control again, thanks to medication, I feel much more in control over my life in general. That being said, it is still easy to undereat while living with narcolepsy. Acquiring food and preparing food takes energy. I often have an empty fridge because I don’t have the energy to go grocery shopping. And even when I do have enough food in the house, I struggle to have enough energy to prepare it.

I say this as I am eating canned vegetables, from the can, with a spoon, at 3:30 in the afternoon. Living with narcolepsy isn’t always pretty. In fact, it usually isn’t. But I will say that my relationship with food has improved now that I am properly medicated.