So I tried Xyrem for a week, and I did sleep like a baby. It was actually wonderful—I would wake up in the morning feeling completely rested and not feeling like I needed twenty more hours of sleep. I hadn’t felt that way for eight years. But it upset my stomach so badly that I lost even more weight because I was unable to eat anything. I’m down to a hundred pounds. I was around 111 before this summer…
My doctor is just plain flummoxed by my strange reactions to meds, so he made me stop everything over the weekend—even my anti-depressant. As would be expected, I felt horrible in every way. But one of the worst parts was what someone said to me about how I would be off my meds:
“You’re just going to feel tired…”
I know that she meant no harm by what she said, and for most people, those words may have sounded like a nice sentiment. But for someone who is sick, it was a slap in the face. I wish I knew what it felt like to get tired. Shoot, I wish I could feel tired in the sense that you think of being tired, because your definition of tired is probably my idea of a good day. When I say I’m tired, it’s worse than if a normal person went three days without sleep. My tired is not your tired. Your tired is as similar to mine as being able to swim one lap is to being Michael Phelps.
I’ve been sick for awhile, and often, when I’ve told people I’m tired and sleepy and how hard it is, I get a cold, “Yeah, I’m tired, too.” Usually, people mean well and might even think they’re being sympathetic by saying they relate. But that’s the problem—there’s no way you can even imagine my tiredness unless you’ve lived with a chronic illness.
By saying you’re also tired and sleepy like I am, you’re telling me what I’m dealing with is normal and trivial—that it’s just what everyone goes through sometimes. You’re telling me I should just suck it up and deal with it and get some sleep, because that’s what you do when you’re “tired.” But that’s the difference—your tiredness goes away, but mine does not.
So please, never even imply that a narcoleptic “just feels tired.” That’s like saying the Pacific Ocean contains “a few gallons of water.” No, the ocean is water, and in fact, it’s the most water you’ll ever see and is bigger than you could possibly imagine until you are thrown overboard and left bobbing around by yourself in the middle of it. When you are there, you can realize what an ocean really is. I have the privilege of being stuck swimming alone in an ocean of “tired.” Don’t tell me you know how it feels to be stranded here, because I don’t see you swimming around next to me.
It’s time for all of us to stop telling people that we know how they feel, because we don’t. It’s time to stop responding to others’ pain with insensitive comments. Why can’t we just believe people when they say they hurt? Why do we tell people how they should feel? It’s not that hard to just take a moment to sit down next to someone and acknowledge that what they’re telling you must be as hard as they say it is. That’s all I’m asking—to just listen and not try to tell me what I’m facing isn’t that bad.