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What It Was Like to Grow Up With Chronic Fatigue Syndrome

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I’ll never forget visiting with my sister one day after she had gotten a new FitBit. She was bouncing around trying to get all her steps in for the day, while I sat down chatting with her. Even just walking to and from the kitchen can wear me out most days, but she is constantly moving, never standing still.


I think it is often hard for a healthy person to understand exactly what chronic fatigue feels like for those dealing with chronic illnesses. So often it seems the healthy have unending reserves of energy. I’ve often felt like I was just a lazy person, as I never remember having the kind of energy that others seemed to possess. It took me years to finally get diagnosed with a chronic illness and find out I actually had quite a few health problems I’d dismissed over the years as simple quirks of my body. Some symptoms were even overlooked because I simply did not realize other people felt differently. Fatigue is definitely high on this list.

I guess I always thought other people felt the same way I did. Which often led to me being greatly confused by some activities, especially sports. It always seemed like such a tremendous waste of energy to be running back and forth like that. I remember attempting to join a basketball team one year. Once, in the middle of a game, I had finally caught up to everyone at one basket, and they were already taking off to the other end of the court. I was so frustrated; it seemed that by the time I would get to one end of the court, they were already racing back to the other end anyway. So I developed my own genius plan, I was just going to wait at our basket. They would be back in a second anyway, so I refused to try to run and keep up with them. It wasn’t until recently that I realized all of those other kids simply enjoyed sports because they had an abundance of energy and it was an outlet to use it. I always thought I couldn’t keep up because I was just out of shape. But no matter how hard I tried, I never could seem to keep up. I’ve never remembered having extra energy to spare.

Even as a little kid, I remember preferring low-key activities like playing with Barbies, reading or watching movies. I never enjoyed running and playing outside. I remember going to visit my best friend and wanting to chill on the couch all day watching movies. She always wanted to go and do something, but I was perfectly happy just to sit on the couch all day.

In college, I was the only person I knew who took naps nearly every single day. One of my friends woke up at 5:30 every morning, studied, went to classes, worked part-time, hung out with friends and even got involved in the theater productions. I, on the other hand, avoided morning classes as much as possible. I usually woke up at 9:00, went to classes, took a nap, did some homework and went to sleep. I was also involved in the theater, but it would end up being the only fun time I scheduled in my day. I rarely hung out with friends and was always tired. I heard that “everyone” was tired in college, but no one seemed to be dragging nearly as much as I was.

I didn’t realize just how bad my fatigue was until recently when I was watching a TV show and just watching the characters standing around talking made me tired. Just thinking about constantly being on the go, or something as simple as standing around at a party is hard for me to even fathom.

So before you judge someone for being chronically fatigued, or even before you judge yourself for struggling to keep up with others, just remember that some simply don’t have the same energy reserves as a healthy person. I think oftentimes it’s hard to understand another person unless you walk a mile in their shoes – or in my case, sit for an hour on their couch.

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Thinkstock photo via AndreyPopov.

Originally published: August 17, 2017
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