Chronic Illness Fatigue
How to love your life when it's hard to stay awake for it.
Posted Apr 16, 2018
If you have a chronic illness, then you’re likely familiar with the fatigue you just can’t shake.
Sometimes it feels like having the flu: Your muscles ache, your brain is foggy, and you want to sleep for decades. Other times, it feels like recovering from the flu: You are well enough to be interested enough in the world around you such that you don’t long for sleep, but your brain and your limbs — Bambi-like — are tentative and trembly as you go about your business.
During good periods, you’re more certain of your movements, stronger and more purposeful. But you never, ever forget that these bursts of relative energy are gifts that come with an expiration date.
Chronic illness fatigue changes the way you see yourself. The person in your mind — perhaps based on the person you were prior to diagnosis, perhaps also based on how people your age seem to live — can work all day, go out at night, manage multiple relationships, take care of household chores, exercise, juggle fulfilling hobbies, and get up the next morning to do it again. The person in your body drags herself to the end of the workday, manages to pour a bowl of cereal for dinner, and leaves the bowl in the sink because washing it feels overwhelming.
Chronic illness fatigue also changes the way you relate to others. You are aware that you disappoint people by canceling on plans, by declining invitations too often, by not returning phone calls on those days when you can barely tie your shoes. It hurts that you can’t keep up with your kids, that your spouse picks up the slack for you with household chores, that you are too tired to drive out to see your parents as often as you’d like. You may isolate yourself in hopes of mitigating that feeling that you are a failure at relationships.
Chronic illness fatigue can make you angry at the world and envious of other people. And that’s okay.
It’s not fair when you’re a kid and you can’t play sports with your friends. It’s not fair when you’re in college and a night out partying will cause you a week of utter exhaustion. It’s not fair when your honeymoon choices are narrowed because traveling increases your fatigue such that you’d be spending your whole trip comatose. It’s not fair when your son wants you to lead the Boy Scout camping trip and you have to say no. It’s not fair that you never get vacation days from work because you save them to use as sick days. It’s not fair when you can’t work at all. It’s just not fair, and you’re allowed to feel that.
That said, this is the hand you’ve been dealt. How are you going to play it?
Say good-bye to the “idealized self”
That person in your mind? The one with boundless energy who does everything well and also has terrific hair? She’s kind of a mean girl. Widening her eyes and scrunching up her mouth at you, she exclaims, “Really? You’re tired? Again? How do you stand yourself?”
It’s time to banish her from your mind. The next time she hisses in your ear, “If you were healthy, you wouldn’t be such a disappointment,” you need to interrupt her poison and talk back to her. Tell her whatever works best for you, but please make it some variation of “Shut the hell up.”
Listen to your body
Now that you’re not being bullied by the mean girl inside, you will have the clear-headedness to live in the body that you’ve got and listen to what it needs. You will grow to respect its knowledge and know it so well that you will develop a skill of anticipating what it requires of you. Ten hours of sleep? Check. Choosing to read quietly instead of cleaning the house? Check. Taking Saturday to rejuvenate instead of running errands? Check. You will be so attuned to your body that it will not have to scream at you to pay attention; a whisper will do.
Say no again and again
You will get really good at saying the word “no." You won’t serve on committees, go to social affairs, or maintain friendships unless you want to. Your energy is just too limited to spend your time saying “yes” to commitments that aren’t satisfying.
Something amazing will happen as a result: Your days will be filled with people and activities that are highly meaningful to you. You may not be able to pack as much into your day as someone who is able-bodied, but what you do pack in will be important and soul-nurturing.
Learn to love time spent with yourself
Because your body prevents you from being constantly on the go, you’ll be alone more than most people. You’ll learn to make resting a pleasure as opposed to a punishment. Perhaps you’ll sit on a couch by a window where you take in the changing seasons. Maybe you’ll surround yourself with good books, learn to knit, or light a scented candle and listen to music as you doze. It can be hard to miss out on activities when you’re not feeling well, but spending time caring for yourself can be restorative emotionally, as well as physically.
Be flexible and creative in maintaining relationships
It may feel as though friends drift away because you don’t have the energy to keep up with them. You’ll learn to be honest with people you care about, telling them that you want them in your life even if you aren’t able to be with them as much as you’d like.
You may not be able to attend their party, but you’ll call them the next day to hear all the little details about it. You may not be able to spend an entire evening out with them, but you’ll duck in for dinner and leave before dessert. You’ll text them articles and cartoons and funny pictures that make you think of them. You’ll invite them to come over and see you when you’re feeling too sick to go out. You’ll redefine what it means to be a good friend and realize that — healthy or not – you are a person worthy of relationships.
Enjoy the gifts you are cultivating as a result of your illness identity
You live life at a slower pace now. You tend not to take anything for granted — a beautiful day, a child’s smile, the way your dog feels as she nuzzles you when you nap. You are appreciative. You also know what it is to suffer — to feel pain, loneliness, and fear. You are more in tune with the world’s dark side than you were before your illness. You are empathic. You are more you than you’ve ever been in your life because you no longer have the energy for chasing after versions of yourself that don’t feel authentic. You are unique.
This is not a happily-ever-after story. As much as we work on loving our fatigue-filled lives, we still wish we could do more and have more. It’s okay — more than okay — to grieve this on a daily basis. But we also can squeeze a lot out of these lives of ours, appreciating what we’ve got and blooming where we’ve been planted.