For many with chronic illnesses, even getting out of bed can use up too much energy. — TNS
How many “spoons” do you have left today?
For those with chronic illnesses, this often isn’t just a question, but a way of life.
While individuals without chronic conditions may take their energy levels for granted, those managing chronic illnesses must treat their energy as a finite resource, symbolised as “spoons”.
Spoon Theory, a concept developed in 2003 by American blogger and systematic lupus erythematosus (SLE) patient Christine Miserandino, has become an invaluable tool for explaining the daily challenges faced by people with chronic illnesses.
By using spoons as a metaphor, the theory illustrates how chronic pain, fatigue or disability impacts their energy levels, making it essential to ration energy carefully throughout the day.
Miserandino first came up with her Spoon Theory during a conversation with a friend at a diner.
Her friend had just asked what it was like to live with SLE.
To explain, Miserandino grabbed spoons from the table, using them to represent her daily energy supply.
Every activity from getting out of bed to preparing a meal required giving up one or more spoons.
When the spoons were gone, so was her ability to do anything else that day.
This simple, yet profound analogy offered a tangible way to describe the invisible limitations of chronic illness.
The concept resonated widely, offering people with chronic conditions a framework to articulate their struggles to loved ones.
Over time, it evolved into a global community of “Spoonies”, individuals who embrace the concept as a tool for self-awareness, advocacy and mutual support.
A versatile metaphor
For United States-based advocate Linda Caserman, Spoon Theory became a turning point in her life.
Miserandino carries this big spoon with her every time she gives a talk about the Spoon Theory. — LINDA CASERMAN
Diagnosed with autoimmune hepatitis in 1995 and Hashimoto’s disease in 1998, Caserman discovered the theory in 2005 and became involved in the online community Miserandino had created.
Caserman now manages the social media accounts for Miserandino’s platform, But You Don’t Look Sick.
“The community isn’t just for people with lupus; it’s for anyone managing chronic illness.
“Many experience overwhelming fatigue, and by sharing how I manage it, I hope to help others.
“It’s become a support network for everyone,” Caserman tells StarHealth in a video call.
This shared understanding extends beyond individual diagnoses, uniting people with various conditions under a common metaphor to explain their shared invisible challenges.
Whether managing autoimmune diseases, mental health challenges or invisible disabilities, the Spoonie community helps to foster connection, support and empathy.
In England, for example, the concept has inspired initiatives like “Spoonie Kids”, helping children with disabilities communicate their struggles.
It’s also been widely embraced in mental health advocacy, 12-step meetings for substance addictions, and even creative outlets like plays and online games.
“Christine and I always say, as long as the Spoon Theory is used positively to explain fatigue or the realities of chronic illness, it doesn’t matter who uses it,” Caserman says.
“Even if someone without a diagnosis uses the metaphor to describe their exhaustion, it can still help foster understanding.”
Simple tasks become difficult
Freelance painter Siti Suhaillah Hussein, known professionally as Sisu, credits the Spoon Theory with helping her manage her life with SLE.
Diagnosed in 2022, Sisu had to leave her retail job as her fatigue, swollen legs and joint pain made daily tasks unbearable.
Despite her challenges however, she managed to find a new path through art.
A therapeutic hobby turned into a full-time career when one of her live wedding paintings went viral on TikTok in 2024.
“Art became my therapy,” she shares, balancing her artistic pursuits with the daily energy constraints of her condition.
For Sisu, who lives in Johor Baru, the Spoon Theory is a daily guide.
“On a good day, I might have nine spoons.
“If I overexert myself, I’ll have fewer the next day – maybe five,” she explains.
By prioritising light exercise and art, she has found ways to replenish her spoons and maintain emotional well-being.
Sisu also emphasises the importance of family in managing chronic illness.
Her husband’s unwavering support has been crucial, she shares.
“On tough days, my family understands when I need to rest, but there are still misunderstandings.
“People often think simple tasks like folding laundry are effortless, but for those of us battling chronic illness, they actually cost spoons,” she says.
Being mindful and realistic
Psychologist Joyce Hue, who was diagnosed with encephalomyelitis when she was 10 years old, also relates deeply to the Spoon Theory.
Hue shares how the Spoon Theory aligns with her RM100 budget analogy to help patients with chronic conditions manage their limited energy levels. — EMALIN ZALANI/The Star
Encephalomyelitis, which is usually triggered by infection, involves inflammation of the brain and spinal cord.
Hue endured severe physical impairments, including disrupted coordination, speech difficulties and the inability to perform basic tasks.
“For two years, I relied on a wheelchair to attend school.
“Eventually, I moved to using walkers, but every step was a struggle,” she recalls.
With little professional mental health support available then, her parents’ optimism was what fuelled her determination.
Over time, she adapted to her limitations, finding strength in acceptance rather than resistance.
Now a counsellor at a mental health clinic in Petaling Jaya, Selangor, Hue has developed a “RM100” analogy, similar to the Spoon Theory, which she often shares with her patients.
This analogy compares daily energy to a limited budget of RM100.
“For example, if you spend RM80 on a single activity early in the week, you’ll have only RM20 left for the rest of the days,” she explains.
This analogy helps her patients understand the importance of careful planning and accepting their limitations.
She points out that many people struggle when transitioning from being able-bodied to living with limitations.
“The Spoon Theory offers a structured way to prioritise activities, balancing what is essential with what is achievable.
“It’s not about giving up; it’s about making mindful adjustments,” she says.
She adds that the concept serves as an effective communication tool, especially for those with invisible symptoms.
“It can be hard for others to grasp why someone can no longer maintain their usual pace.
“Using relatable examples like spoons or budgets helps bridge this gap, enabling loved ones to better empathise with the challenges of managing limited resources,” she says.
Hue also advises caregivers to listen actively and avoid assumptions.
“Listening to the patient’s needs, rather than assuming what’s best, is vital.
“Small acts of understanding, such as asking how to help or learning about the illness, can make a significant difference in the quality of support,” she says.
Focusing on the present
For those navigating chronic illness, the Spoon Theory can become a framework for self-compassion.
Sisu poses for a photo with three of her artworks that showcase how she feels living with SLE at the Rantai Art Festival 2024 that was held in Rekascape, Cyberjaya, Selangor. — SITI SUHAILLAH HUSSEIN
By recognising their efforts within the constraints of their condition, individuals can focus on what they can achieve, rather than dwelling on what they’ve lost.
Living with chronic illness is a journey of resilience, adaptation and self-awareness.
Hue advises: “Don’t lose hope. Ignore judgments from others and focus on your well-being.
“Life is about adaptation and finding joy in new ways.
“If one door closes, another path awaits – perhaps less conventional, but equally fulfilling.”
Through personal determination, the support of loved ones and professional guidance, individuals can learn to thrive despite their limitations.
The Spoon Theory can serve as a powerful tool on this journey, fostering empathy and understanding for patients and their families as they navigate the challenges of chronic illness together.
