“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 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.