Lana Barhum, freelance writer, has lived with rheumatoid arthritis and fibromyalgia since 2008. She uses her experiences to share expert advice on living successfully with chronic illness.
I walked into my home, made my way to the couch, and collapsed from exhaustion. My body was fighting me and I had been trying to fight back. At 40 years of age, you would think I would be full of life and energy—but I wasn’t. My joints burned with excruciating pain, my muscles were cramping, and my strength was spent.
I had run out of “spoons” by lunchtime that Saturday, after a few hours of back-to-school shopping with my kids.
What is “The Spoon Theory”?
“The Spoon Theory” is an essay about what it’s like to live with chronic illness or a disability. Author Christine Miserandino, who has lupus, uses spoons as a metaphor for the limited energy that people with chronic disease have.
The basic idea is, you get a handful of spoons every day and each one represents the energy to accomplish one task. Every time you do something—shower, get dressed, make breakfast, drive to work—you lose a spoon. The spoons must be carefully allocated to avoid running out before day's end. And if one borrows from the next day's spoons by overdoing things, he or she may not have enough spoons the following day.
People with chronic illness or disability have a very limited supply of spoons. Once they’re all gone, the only way to get more is through rest or a full night of sleep. People with chronic illness or disability must limit our daily activity to conserve spoons, whereas most healthy people don’t have to. And because healthy people don’t feel the impact of losing spoons for mundane tasks, they don’t realize the amount of energy it takes us to do something as simple as getting dressed.
My life with limited spoons
Most people with chronic illness must manage pain, symptoms, and fatigue every day in an effort to have somewhat normal lives. The key to success is to slow down. We have to learn to stay on the sidelines, say no, not take on more than we can handle, and prioritize. Sometimes that’s easier said than done.
I was 32 when I was diagnosed with rheumatoid arthritis (RA) and fibromyalgia and my spoons started to run out. Like so many people my age, I was caring for my family and focusing on my career. But RA and fibromyalgia changed my life. I had to teach myself how to make do with less energy.
The most important lesson I’ve learned in my journey with chronic illness is that I cannot do everything. Even on my good days, there are not enough spoons. I am a single mother, working a full-time job, and trying my best to raise and support my children. But I’m not Superwoman. I may look okay on the outside, but I am nearly falling apart on the inside on most days.
Budgeting my spoons
On good days, I feel like chronic illness can’t stand in my way. But when I feel good, I have a tendency to overdo things. That often leads to bad days from borrowing against tomorrow’s limited spoons.
Over the years, I’ve gotten better at carefully planning how I’ll use my spoons every day. My chronic conditions take up a lot of my energy and focus. But I still have to be the mother my children need me to be—and often, that means being frugal with my spoons in other parts of my life.
I often cannot participate in family events, or help a friend move, or get involved in my children's school PTA. Some days, it takes everything I have to clean my home. I know I can't do everything I’d like to do, so I hold my spoons close and use them for activities that are most important. If one day I happen to have extra spoons, maybe I will be a little generous—but today, there are not enough spoons to go around.
My back-to-school shopping zapped all my spoons by 1:00 p.m. on that hot Saturday. I didn’t expect it to, but it did. In addition, it zapped some of my spoons from the following day. That experience reminds me to treasure each spoon as a gift and use them as wisely as I can to live the best possible life with my limited spoon supply.
What have you learned about living within the limitations of your chronic illness? What advice do you have for others? Add a comment below to share your wisdom.