“If opening your eyes, or getting out of bed, or holding a spoon, or combing your hair is the daunting Mount Everest you climb today, that is okay.” – Carmen Ambrosio
Tara, 36, wakes up and rolls out of bed. Her pain factor is a five out of 10. She feels well rested after spending the past two days in bed–the result of working an 8-hour day and going to dinner with friends. Today she will try to finish her laundry and run errands. The lupus flare-up appears to have subsided–for now.
Kevin, 28, a graduate student, is not as fortunate. He struggles to keep up with the demands of a full-time job and graduate school. Kevin has weeks when he is able to manage both. However, today, he has become physically and emotionally paralyzed by his autoimmune disorder and struggles to bring even his thoughts together. He is contemplating taking an academic leave of absence until his health improves.
Carmen, 57, has been living with multiple sclerosis (MS) for over 20 years. Each day she wakes up and takes inventory of her physical and emotional well-being. Some days are better than others. However, the uncertainty of her health has prompted her to seize the moment and engage fully in her craft as an author.
For Tara, Kevin, Carmen, and thousands of others, the challenge of managing their chronic conditions while also meeting the demands of daily life can be daunting. To those around them, they look perfectly healthy. Smart and ambitious, they excel when they are feeling well. However, without warning they can be thrust into the throes of physical, emotional and cognitive dysfunction, rendering them unable to get out of bed, let alone handle professional, academic or personal responsibilities and obligations.
The Spoon Theory Revisited
In an attempt to help her dear friend understand what living with lupus feels like, writer and activist Christine Miserandino crafted The Spoon Theory to explain how energy is limited by chronic illness. Miserandino uses spoons as a metaphor for energy. According to the theory, a person has a certain number of spoons representing energy each day, and each activity depletes a portion of those spoons. In this way, individuals are encouraged to ration and pace their spoon/energy usage in order to accomplish their daily activities. This theory has become widely accepted, and some individuals have even coined the name “Spoonies” for those with conditions that restrict energy. However, the Spoon Theory relies on myths about chronic illness and energy.
Myth 1: There is a set number of spoons each day.
The amount of energy (spoons) needed to function is not prescribed in a daily dose. Clients may wake up and feel that they are armed with a picnic basket filled with spoons. Then a few hours later, they crash and burn and are entirely depleted of whatever resources they thought they had. It is as if the bottom fell out of the basket without warning.
As Jennie, a blogger for The Mighty, an online support community for people facing health challenges, describes in her post, “Why the spoon theory doesn’t fit my life,” what seems like a high energy day can suddenly turn into total depletion:
“Often I wake in a morning and think, ‘Yes! Today is a good day!’ Then, within hours, or even minutes, the tides have turned. Maybe my spoons are ninjas? Maybe the borrowers have been rifling through my stash? Whatever it is, I can go from having just enough energy to less than zero quicker than a scrambling fighter jet. Sometimes it’s due to a weather change; sometimes it’s stress. Often I have no clue whatsoever what happened.”
Myth 2: Spoons can be banked for another day
The Spoon Theory suggests that rest will help bank energy for the next day. This sounds like it makes sense, right? However, chronic illness doesn’t play fair. Resting for a day or two may result in feeling even more fatigued the following day. This makes it difficult to plan activities for the day, week or month. For example, my own daughter, who was recently diagnosed with lupus, confided that some days she wakes up feeling energized only to crash within hours and be wholly depleted the remainder of the day or even the next few days. It is frustrating to both the person who has the illness and those around them who may want to make plans. At times, life is only manageable in chunks of minutes versus days.
Myth 3: Activities require a specific number of spoons
One of the challenges of the Spoon Theory is that it is impossible to quantify (in spoons) the amount of energy it takes to accomplish any given activity. The amount of energy expended is influenced by other variables, including pain threshold. For example, getting dressed for the day may be as easy as slipping into an outfit one day, but feel like donning a suit of armor the next. So, although the activity for both days is identical, the depletion of energy is vastly different. Therefore, preparing for energy expenditure can feel like a futile effort.
How counselors can help
Living with the day-to-day uncertainties of a chronic illness can be isolating, alienating and frustrating. Making plans with friends and family must be spontaneous and depends on the illness effects du jour. Counselors can assist clients and families who are impacted by chronic illness by validating their experiences, providing psychoeducation, and stepping up to advocate on local, regional and national levels.
Validate
By nature, counselors are exceptional listeners who are able to hear and identify the concerns of the client. Additionally, we can validate the challenges experienced by the client. Clients may feel anger and resentment at how their condition may restrict activities. They may feel isolated and alone. Friends and family who were present at the initial diagnosis may have returned to their busy lives. This often may leave the client feeling abandoned and alienated. Validating the difficulties of navigating chronic illness allows the client to feel heard and understood.
Educate
While we are able to sit with the client and the emotional, cognitive and physical pain of chronic illness, we can also provide psychoeducation that may promote strategies for better self-care. For example, helping clients grieve the old lifestyle and create a new normal that is shame-free and includes strength-based coping skills that allow them to deploy greater flexibility in the face of those “not-so-great days.”
Counselors can also help clients locate resources in the community, such as support groups or career assistance. They can provide education to family and friends about the uncertainty of living with chronic conditions that tax energy. For example, helping significant others understand that staying in bed all day is not indicative of a character flaw or laziness but a real depletion of energy (those spoons again!).
Advocate
Counselors can contribute to efforts for institutional changes that will benefit clients by participating in legislation and signing petitions. We can attend hearings and provide testimony to the needs of our clients. Finally, counselors can use their voice and power to advocate for clients by participating in any number of activities to increase awareness or fund research.
Conclusion
The Spoon Theory attempts to explain the energy consumed by chronic illness. In reality, it oversimplifies the complexity of day-to-day functioning. Perhaps one of the gifts of counseling is to provide a relationship without conditions where the client is valued beyond the constraints of the illness and a place that welcomes vulnerability and recognizes the courage of showing up each day in spite of the challenges. Perhaps the act of counseling is — as Brené Brown suggests — joining the client in the “arena” and experiencing their pain and disappointment. Perhaps even in the complexity and uncertainty of living with chronic pain and illness, the counselor can help clients recognize that showing up each day if worth the challenges.
Finally, perhaps in the midst of the discomfort of the seeming betrayal of the body and mind, the best gift counselors offer to their clients is as author Hannah Brencher says in her book, If You Find This Letter: My Journey to Find Purpose Through Hundreds of Letters to Strangers, “… the permission to feel safe in their own skin. To feel worthy. To feel like they are enough.”
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Related reading, from the Counseling Today archives:
“The tangible effects of invisible illness”
“Assessing depression in those who are chronically ill”
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Cheryl Fisher
Cheryl Fisher is a licensed clinical professional counselor in private practice in Annapolis, Maryland. She is director and assistant professor for Alliant International University California School of Professional Psychology’s online MA in Clinical Counseling. Her research interests include examining sexuality and spirituality in young women with advanced breast cancer; nature-informed therapy; and geek therapy. She may be contacted at cyfisherphd@gmail.com.
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Opinions expressed and statements made in articles appearing on CT Online should not be assumed to represent the opinions of the editors or policies of the American Counseling Association.
My only complaint about this article is that it fails to appreciate the value of an oversimplified model such as the Spoon Theory for those of us with chronic illness in trying to help our friends and family understand what is going on with us. Those of us living with chronic illness know full well that it’s not as simple as this theory makes it out to be, nor was this theory ever meant to be taken at 100% face value. The original online piece about the spoon theory was one of the first descriptions of chronic illness that some of my friends and family were able to wrap their heads around and have their first a-ha! moments in understanding me. From there, I’ve been able to build on that understanding.
I appreciate separating fact from fiction about chronic illness, but we don’t need to completely ditch this theory as our loved ones, while well intending, are not vested in the subject matter enough to read this stuff.
Dear Kristie and Amy,
I am so sorry that I did not see your posts until now. AND I appreciate your feedback.
As a parent of a child with Lupus and R.A. , we have been immersed in the metaphor which is helpful to have conversations with others who are not impacted with chronic illness. However, my daughter and those individuals I have talked with feel that the Spoon Theory doesn’t accurately capture their experience of energy expenditure. For example, one day getting showered and dressed may take 2 spoons while another day it may require all 10 spoons. This unpredictability in expenditure can be frustrating to the individual and may result in negative self talk. The intention of the article was to point out that we have the ability to help clients and others recognize that while the theory helps articulate an experience…there is great variance and need not determine a person’s progress.
Thank you, again for your feedback.
The spoon theory article was obviously not meant as some sort of scientific article. She was simply reiterating a metaphor she found useful to explain how life worked for her. I feel like your article is tearing it apart as if it were something it’s not. You’re looking too far into it and also seem to be using your negativity and pedantry to try to sell something to somebody, which is pretty lame and quite ridiculous.
Dear Cheryl, As a mother of a young daughter who has Multiple Sclerosis; as a person who has had JRA/RA, and as the widow of a dear man who had a 27 mm VSD discovered too late to fix, – I think the spoon theory is an excellent conversation starter to someone’s “invisible” illness. The spoon theory was never meant to be the “be all and end all” description of energy of one who is ill. It was a helpful analogy, and I think anyone watching the spoon theory video recognizes that, to help people understand what it is like to live as someone with an illness. Each human being responds to their own illness differently. My husband, for instance, was given an “end date” when he was quite young, of the age of 21. He lived recklessly throughout his teen years trying to get the most out of his 21 years of life. After experiencing close-to-death illnesses on multiple occasions (three blood clots to the brain, pneumonia, code blue, etc) he continued to put one foot in front of the other without complaint until the day he died at age 39. My daughter on the other hand, diagnosed at age 17 with MS, has had to struggle with not just her health, but the opinions of other people who can’t SEE her ill health, and therefore expect her to act as if she is completely healthy. The Spoon Theory is NOT for the ill person, but for the healthy one. OF COURSE, it might take my daughter all her spoons just to get out of bed on certain days, but that is the whole point. The Spoon Theory might even be helpful to those of you who give counseling.
Why not use the simplest and widest known description of a battery? It’s even easier to explain. Everyone gets that concept and it doesn’t lessen what you’re going through. It makes more sense, isn’t insulting and childish. There’s now emoji’s for a full & empty battery.