Spoon theory: What is it and how can it help people living with chronic illness?

What is spoon theory? What are its origins? 

Spoon theory is a metaphor created and described by Christine Miserandino in an essay on her blog, “But You Don’t Look Sick”. Since publication, spoon theory has become popular among people facing chronic illness, as it describes the state of having limited energy, using the image of spoons as a unit of energy. 

Miserandino lives with lupus, a chronic autoimmune disease characterized by chronic pain, fever, and fatigue, among other symptoms. In the essay she describes how one day, while eating out with a friend, she wracked her brains to find a way to help her friend understand what it’s like to live with chronic illness. She writes, 

“I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself?”. 

She then gathered 12 spoons from her table and the tables around her and placed them in front of her friend. Each spoon represented a finite unit of energy. She then asked her friend to describe her typical daily routine, taking away a spoon for each task. 

Taking a shower? That costs one spoon. Getting dressed? One spoon. Taking the subway to work? Another spoon. Getting up out her desk chair to go to the water cooler at the office? Yet another spoon. Soon her friend had run out of spoons, meaning that she had no more energy for the other activities she needed or wanted to do. 

This visualization quantifying energy as spoons and this understanding that people living with chronic illness are only equipped with so many spoons a day struck a chord with readers across the globe.  

Spoon theory has now become a common term used in the language of chronic illness, with netizens identifying themselves as “spoonies”, connecting with one another on social media via related hashtags (#spoonies, #spoontheory, etc.), and using the theory to describe the limitations they face in their daily lives and how they overcome them. 

How can spoon theory help people living with chronic illness? 

Spoon theory is first and foremost a useful tool to help friends and family members of people living with chronic illness understand the burden of fatigue, pain, and other symptoms in their everyday lives. Simply feeling understood by those around you can bring a sense of relief, a feeling of renewed confidence, and can help one to feel less alone. 

Spoon theory further empowers patients in a multitude of ways: 

Developing self-understanding and self-compassion 

One of the highest values of spoon theory for people living with chronic illness is that it enables them to better understand themselves. While we are often reminded that we are not defined by our illnesses, the spoon metaphor can help you to recognize that if your body decides that you can’t check that last task off your to-do list or that you can’t make it to those after-work drinks, it is not a personal failing. It is not something that you can help or that you have power over. 

Understanding this can help to ease the cultural pressure to just “stick it out” or to “try harder”. When you know that you have physical or mental limits and that they’re not fully in your control, it gives you the space to be kinder to yourself, something that is important for chronic illness patients. 

Helping your doctor understand the impact of chronic illness

In day-to-day life we often quantify the energy or battery life left in inanimate objects – think about your phone or computer battery or the gas tank in your car. We all know what it means when your tank or battery is almost empty. 

It can be difficult to quantify the “hidden” symptoms of chronic illness like pain or fatigue. By using an analogy or visual metaphor like spoons, it can help clinicians gain a better understanding of the impact of different activities on the patient. This can open up dialogue and broaden the doctor-patient relationship, and hopefully lead to more adapted care, treatments, or alternative approaches to the patient’s illness. 

Finding community 

Countless research has demonstrated the benefits of community for people with chronic illnesses. Whether an in-person peer support group, an online community like Carenity, or a nonconventional digital community like #spoonies, connecting with others has been found to aid in improving both physical and mental health. 

For example, a study published in 2013 conducted among 299 individuals living with diabetes investigated how peer health coaching contributes to improved diabetic self-management. In the study, diabetes patients were divided into two groups, one with peer coaches, and one without. The research found that study participants with “low” diabetes self-management saw a slight increase in their A1c level when they were not accompanied by a peer coach, while those who did have a coach experienced a decrease in their A1c. 

Further research has established that people who attend peer support groups related to their illness see: 

• Better health outcomes than patients who receive purely medical treatment 
• Better access to additional health services, such as lab tests 
• Improved confidence in undergoing and in adhering to treatment 

Engaging in a community of people who understand what you’re feeling or experiencing not only helps to decrease the feeling of isolation or loneliness, but also it raises the likelihood of improving symptoms and lowers the risk of developing depression. 

Finding the “spoonie” community could not be more simple, a quick search using #spoonies or the other related hashtags will open the door to a wide community of people living with all sorts of chronic illnesses across the world. 

Looking for a #spoonie space on Carenity? Don’t hesitate to join and participate on the forum!

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