You Can’t Give Away What You Don’t Have
It’s easy to push too hard. When my tally of energy is spent, I borrow against the next day, always thinking I’ll make it up when I get to whatever arbitrary day I’ve deemed a “day of rest.” However, I never do until I’m completely exhausted and literally unable to put one foot in front of the other.
I identify as a Spoonie, a term coined from a conversation between Christine Miserandino, blogger, speaker and lupus advocate, and her friend who asked what it was like living with lupus. To explain, Christine gathered a handful of spoons, passed them to her friend and said, “Here you go, you have lupus!”
Each task her friend listed for her day cost her a spoon until she had only one spoon left by the 7 pm mark in her day. She still had to eat, clean the dishes and get ready for bed. Each of those actions would cost a spoon she didn’t have. Through this explanation, Christine’s friend learned just a few of the lessons that life teaches people with chronic and/or invisible illness.
From that lesson posted on Christine’s blog “But you don’t look sick?” a movement started. Many people with chronic illness from lupus to multiple sclerosis to chronic fatigue syndrome came to identify with the visual representation of what it means to live life with a small amount of “spoons” in a world that runs on infinite numbers.
I have fibromyalgia. I also have been diagnosed with C-PTSD, OCD, anxiety and depression. All of these invisible illnesses take a toll. I’m constantly tired. Some nights I don’t sleep. Some days I sleep too much. Sometimes I’m late because I have to repeat the same ritual a few times until I can leave the house. Or work. Or the car. There are days when I break down at the thought of having to leave the house.
I’m certain, although my friends have never said as much, that I’m known as a “flake.” When I hit the impenetrable wall of exhaustion brought on by too much “spoon borrowing,” I fall off the face of the earth. I don’t post to Facebook. I won’t go to meetings or social events. I cancel plans with friends. I miss deadlines. Not because I don’t want to complete them, but because I forget what day it is or I think I’m a day or sometimes a week earlier than real time.
“I feel responsible for being the flaky friend.“
Invisible illness sufferers are often blamed for the things they can’t do. We go home to make sure our dishes are done and we get enough rest to work the next day. Our friends are out having drinks after work and staying up a little past their bedtime for a good conversation over the latest TV episode I haven’t had the energy to watch. My illness is alienating and, on top of the things I have to cancel, friends often blame me for not spending time with them. The most heartbreaking thing to see on Facebook is the meme about friends always making time for you if they really want to be in your life.
It isn’t that I don’t want to be there. It’s that I can’t.
I feel responsible for being the flaky friend. Hence the spoon borrowing. Given the alternative, however, I learned to slow down, not overbook myself and only cancel a few plans. The friends I have now understand when I say I simply don’t have the spoons. It still hurts when I hear the disappointment in their voice when I have to say no, but I’m slowly learning I’m important, too.
How have you learned to take care of yourself with invisible illness?
Carrie Fulk Vaughn
A few words about me
Carrie Fulk Vaughn is a licensed massage therapist, certified pharmacy technician, feminist, Spoonie, gamer and genderfluid author of LGBTQIA and straight romance, urban fantasy & horror, full of Honey Butter Chips & Dr Pepper.