My Secret Way of Coping With Chronic Disease

Your illness may be here for the duration, but here’s how you can deal with it

Jessica Ryen Doyle,

AARP Experience Counts

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En español

Published March 21, 2024

Paul Spella

For me, managing everyday activities is a job because of my chronic illnesses.

I daily experience overwhelming fatigue and pain. Some days, I fight bacterial infections or an upset stomach due to my diseases — common variable immunodeficiency (CVID), Crohn’s disease and arthritis.

Every 21 days, I receive plasma infusions to replenish my antibodies. I take copious amounts of antibiotics, pain relievers and pills to calm my digestive tract.

It’s extremely hard to explain what life is like to family and friends. Sometimes, I must do less on one day because I know the next day is going to be busier and full of more activities.

Enter Spoon Theory.

One night in 2003, when Christine Miserandino was a college student, was with her roommate at a diner when she took her lupus medication. Like me, Miserandino is one of the one in six Americans who live with a chronic illness.

Miserandino’s former roommate and best friend asked what it was like to live with lupus.

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"She came to doctors with me, she saw me walk with a cane and throw up in the bathroom," Miserandino wrote in her blog, “But You Don’t Look Sick.” "She had seen me cry in pain; what else was there to know?"

Miserandino tried her best to explain to her friend how frustrating and exhausting it was trying to keep up with her peers while struggling with her disease.

That’s when she came up with Spoon Theory.

Grabbing spoons from nearby tables, Miserandino explained that each proverbial spoon is an amount of energy for each daily task. Each spoon helps a person budget the amount of energy they are able to spend in a day. Here are some examples of my expense sheet:

Showering = 1 spoon

Drying hair = 1 spoon

Putting on makeup = 1 spoon

Most people wouldn’t second-guess these seemingly simple activities. For me, they are luxuries.

Once I use a spoon, I can’t reuse it. Sometimes, I must lie down after using just three spoons and rest until I can use another one.

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The infusions I mentioned earlier? They start around 8:00 a.m. By 1:00 p.m., I have no more spoons left.

Malea Wilson, who lives outside of Chicago, also has CVID. She suffers from Ehlers-Danlos Syndrome and postural orthostatic tachycardia syndrome. The former leaves her with muscle pain and weakness, torn ligaments and dislocations. The latter causes irregular heartbeats, dizziness and hypotension.

“I’m likely to dislocate joints walking, rolling over in bed or coughing,” said Wilson, an English teacher. “Just when I think I’m stable, I’m thrown a curveball.”

Wilson said each day she uses so many spoons, she’s left with practically noneby the weekend, causing her to “crash.”

Wilson and I must make concessions to get through each day. We both pay someone to come and clean our homes. We use a grocery delivery service and sometimes order dinner because we are too pained or fatigued to cook.

It’s crucial to budget our energy by using the spoons carefully throughout the day. We may borrow from tomorrow’s spoons, but that could be the day we get an infection, as Miserandino explained.

No one wants to run low on supply because we never know when we will need a spoon.

Spoon Theory helps me prioritize tasks, set boundaries and say no when necessary. It also helps me cope with the uncertainty and variability of our conditions, as I may wake up some days with fewer spoons than others.

Spoon Theory can also be a tool for self-compassion and acceptance, as it reminds people with chronic illness that they are not lazy or weak but have a different capacity than others. Spoon Theory has taken on a life of its own since Miserandino’s chat with her friend. It is now widely cited in the medical community.

Our illnesses are here for the duration. As Miserandino wrote, she "can never forget she has lupus," but her Spoon Theory allows me to meet daily challenges and lead a more fulfilling life.

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Jessica Ryen Doyle is the author of Family Tree, a contemporary romance novel, and she is currently working on two other books. She has more than 20 years of experience in writing. She has worked for Gannett, GateHouse Media and Fox News Channel.