My Body is Basically an Old iPhone Battery.
It's 40 degrees in Chicago right now.
For anyone who's ever experienced a Chicago January, you know what a rare gift from the universe that is. It's 40 degrees. That's essentially beach weather. I should be outside. I should be wearing shorts. I should be riding a cute bike with a basket to a farmers market, or something.
Spoiler alert: I'm not outside. I'm where I've been all weekend. Inside, struggling with a particularly intense flare of the debilitating fatigue I've been dealing with for the past few months. Usually I can wrangle it, make it through my required activities like work and grocery shopping, before crashing in bed at 7:30 every night. For the past few days, though, even that has been too optimistic.
I've spent most of the past few days asleep. And when I'm not asleep, I'm not really awake, either. I'm in some sort of in-between state where it's all I can do to throw an old, comforting movie on the TV and try not to think too hard about how time is passing without me. (The new Beauty & The Beast is my recent favorite for this task.) When the fatigue gets this bad, I can't cook. I can't clean my apartment. I can't do creative work, or have taxing conversations, or make a quick trip to the store. It's a strange sort of living yet not living, like a foggy limbo where you can see what's happening but aren't an actual participant. It's like your life is a really boring movie that you're just here to watch, and no one cares that you would give it a serious "thumbs down" rating if anyone deigned to ask you.
Chronic illnesses like IBD come with a variety of symptoms, and fatigue is one of the most common. Some studies suggest that even for IBD patients in remission, almost 40% suffer from fatigue that "adversely affects their quality of life." It works as this silent bandit, stealing patients' lives while, from the outside, it's hard for friends and family to tell anything is even wrong. It's the most invisible of a laundry list of invisible symptoms. It packs a hell of a stigma.
And fatigue is lonely, because it's hard to talk about. When I talk about scar tissue in my intestines or internal bleeding, the healthy people in my life know that things are serious. But when I try, in vein, to describe a dark cloud of exhaustion that never seems to go away, it's less tangible. You get a lot of well-meaning responses along the lines of "oh yeah, me too, I'm so tired!"
While I appreciate that this post-technology world we're living in leaves pretty much all of my peers stressed and tired by the end of a work week, there's a difference between fatigue and being tired. If you're tired, you can rest and you will feel better. You have the power to say "I'll take a nap before this fun event and then I'll be re-energized!" Fatigue doesn't work that way. It's a level of "tired" that no amount of rest seems to fix. It's a symptom that forcibly slows down your life and makes it nearly impossible for you to do all of the things that you love.
I miss being able to do more than one thing in a day –– Saturdays where I could go shopping in the daytime and then still grab dinner with friends at night. Sundays where a mid-day nap after 12 hours of sleep wasn't vital to my survival. Chronic illness forces us to make tough choices –– you want to go see your friends later? Then tough luck, you probably won't be able to go to the gym this morning or run those errands. Went to a company event after a full day of work last night? Forget about getting out of bed today. These are the ways people with invisible illnesses are fighting quiet, internal battles that they may not share with you. Because at some point, it becomes mundane. As angry as it makes you to have to continually make those tough choices, it becomes something you just have to do. Part of your reality, like taking out the garbage or brushing your teeth.
So if you know someone who suffers from fatigue, whether it's chronic fatigue on its own or as a symptom of a larger disease, the most important thing for you to practice is empathy. Make sure they know that you believe them, and you don't think they're just being dramatic, or lazy, or maybe depressed. If they can't make it to something, understand that they are more upset than you are about the parts of life they're missing out on. If they do make it to an event, know how much they sacrificed to get there. Because a life spent in bed is not all it's cracked up to be.