The hashtag #spoonie has become a popular sight on social media, but even those who use it can be uncertain of its meaning and origin. So what is a Spoonie?
The origin of both the term and the hashtag can be traced to Christine Miserandino, the author of the book But You Don’t Look Sick. Within the book, Miserandino outlines Spoon Theory. Spoon Theory is how Miserandino relates living with lupus to performing daily tasks that require a lot of energy for someone who has lupus. Since her story came out, others who have tiring or fatiguing invisible illnesses, other than lupus, have also used Spoon Theory as a way to identify and explain to others what it is like to have an invisible illness. Spoons are used as a measure of energy, and some days you have more spoons than others. So some days it is easy to do a task and you may have extra spoons, while other days you come up short.
By using the #spoonie hashtag, those with chronic illness are able to reach out and identify with others who have conditions, such as migraines, cluster headaches, lupus, fibromyalgia, rheumatoid arthritis, Crohn’s disease, sucrose (sugar) intolerance (also known as Genetic Sucrase-Isomaltase Deficiency), anxiety, depression, bipolar disorder, celiac disease, chronic fatigue, interstitial cystitis, spinal stenosis, MS, nerve pain, chronic pain, autoimmune illnesses and other ailments and illnesses that are not physically apparent. These illnesses often have invisible symptoms, such as exhaustion, dizziness, constant pain, cognitive impairment that do not show but make daily life difficult. Because there are no obvious signs, it can be difficult for others to understand the pain and silent suffering of those with invisible illness. Miserandino created Spoon Theory as way to explain the pain to others. For those without chronic illness, there are an invisible number of spoons to expend on tasks. For those with chronic illness, you have a set number of spoons. Because you have only a set number, you must ration them out in order to get through a day of activities that do not usually require many spoons for most people. Now using #spoonie has become a measure of solidarity for reaching out to find others with invisible illness and being able to share common experiences, like a lack of energy and constantly feeling tired. Budgeting energy for daily chores includes everything from taking a shower to being able to have dinner with friends, or planning things to do around how long it takes to rest up for them.
Spoon Theory is not only a way for those with invisible illness to connect with each other, but also to help others understand the extent of their condition. By understanding what life with an invisible illness is like, people are more apt to be sensitive to the issues of having limited energy while still appearing to be reasonably healthy, or eliminating the stigma of not looking sick while still living with a chronic disease.
So if you or a loved one is living with an invisible illness, post your experience, strength and hope on various social sites with #spoonie.