Living with a chronic illness can be debilitating. Some days, you may wake up with enough energy to climb Mount Everest. But on other days, you can barely roll out of bed and every action takes every ounce of energy you have. Because chronic illness can be so unpredictable, it can be difficult to explain exactly how you are feeling and how difficult some days really are.
“Spoon Theory” is a simplistic way for people who have a chronic illness to express how much energy they have. The theory was created by Christine Miserandino, a lupus patient advocate. From the young age of fifteen, Miserandino had been diagnosed with a variety of illnesses from chronic fatigue syndrome to Epstein-Barr virus. It wasn’t until many years later that she was finally diagnosed with lupus.
Lupus is one of many autoimmune disorders where the body’s immune system can’t distinguish healthy cells from foreign cells and mistakenly attacks the healthy ones. While symptoms will vary between conditions, some common symptoms among conditions include:
- Joint pain and/or swelling
- Abdominal pain and/or cramping
- Digestive issues
- Skin problems
- Cognitive difficulties
One night, Miserandino was out to dinner with her best friend when she took her medication alongside a snack. Her friend suddenly asked her what it felt like to have lupus and be sick. While her friend was well versed in the condition itself, she knew little about what it felt like to actually have lupus.
When she couldn’t find the right words to express how she felt, she found the right object that could; spoons. Miserandino grabbed every spoon she could find and handed the bouquet of spoons to her friend. She explained that when you’re sick, you have to make choices and consciously think about certain things that you wouldn’t normally think about if you were healthy.
“The healthy have the luxury of a life without choices, a gift most people take for granted.”
Most healthy people start the day with unlimited possibilities and energy to do what they desire. They generally don’t have to think about the effect their actions have on their health or energy. When you are healthy, you have an endless supply of spoons.
But when you have a chronic illness, your spoon supply is limited. Instead of being able to go about your day with some sense of freedom, you now have to “count your spoons”. When you know how many spoons you have when you start your day, you get a better sense of where you are starting from and how much you can expect to cross off your to-do list or manage daily tasks.
Every task on the to-do list, from taking a shower to making something to eat and everything in between, costs one spoon. Larger or more difficult tasks may even cost more than one spoon. On days when symptoms are more intense, this may mean being down to half your spoons by the time you start work or school.
Managing a chronic illness means always being conscious of how many spoons you have. It also means being intentional about every decision you make because once your spoons are gone, they’re gone. While it’s possible to borrow from tomorrow’s spoons, you run the risk of not having enough for the next day or the day after that.
Identifying as a Spoonie
Until Spoon Theory was developed, there wasn’t an easy and effective way for chronic illness sufferers to explain the daily trials associated with their condition. Because of the simplicity of the spoon analogy, it’s become accepted amongst people around the world as one of the most useful tools to describe what life with an illness is like.
In addition to serving as a tool for communication and a way to gauge energy levels, it’s also created a unique way to meet others dealing with illness.
Oftentimes, people with a chronic illness feel a division between themselves and their illness-free counterparts. This can lead to increased feelings of loneliness, sadness, and hopelessness. If these feelings are left untreated, they can worsen and lead to depression. In fact, studies show that about one-third of people with a serious medical condition also have depression.
Whether someone is suffering from major depressive disorder or is simply feeling down and out because of your condition, connecting with others can help. Connecting with people who make you feel safe and cared for is one way to help overcome depression and may also improve your chronic illness symptoms.
Healing Power of Community
Time and time again, research has shown the healing power of community. Both standardized peer-support groups and nontraditional communities, like spoonies, have been proven to help improve mental and physical health.
One study examined how peer coaching improved diabetes self-management. The study looked at changes in A1c levels in 299 patients with diabetes. Participants were split into two groups, one group had peer coaches and the other didn’t. They found that participants with “low” self-management experienced a slight increase in A1c when they didn’t have a peer coach. Meanwhile, patients who did have a peer coach saw a decrease in A1c.
Another study found that people who attended illness-affiliated peer-support groups experienced:
- better health outcomes than those who solely rely on medical interventions.
- improved access and exposure to additional health services, like lab work.
- greater confidence in going through and adhering to treatment.
When you involve yourself in a community that understands what you are going through, you improve the likelihood of reducing symptoms and decreasing the risk of depression.
Finding your spoonie community is simple. One easy way to find other spoonies is to search #spoonie on social media. With a quick search, you’ll find hundreds and thousands of spoonies from all over the world with all kinds of conditions.
Another way to meet other chronic illness sufferers is to join the #SpoonieChat, a Twitter chat held on Wednesday evenings from 8:00 to 9:30pm eastern standard time. Dawn Gibson, the founder of #SpoonieChat, lives with spondylitis, food allergies, and learning disabilities. Her idea behind the chat was to create a space where people can ask questions, share their experiences, and help open the lines of communication amongst spoonies.
Managing Life as a Spoonie
In addition to taking and tracking medications, attending doctor’s appointments, and following a specific lifestyle, daily lives can be limited by what some conditions allow the body and mind to do. When speaking in the concept of spoons, it makes it easier to explain to your loved ones that you don’t have any energy left to do the dishes after dinner or need to skip the Saturday night party.
While it isn’t always easy to admit you don’t have any spoons left in your daily reserve, it can help create space between what you want to do and what your illness dictates for you. It’s not your fault your illness limits what you can do.
If you notice yourself feeling guilty for your chronic illness, know you are not alone. There are thousands of spoonies on the PatientsLikeMe who know exactly how you feel. Join the community today to connect with other spoonies who can remind you that you are not your illness.