Chronic pain patients know the drill. Family and friends, try as they might, just don’t quite get it. They don’t understand what chronic pain feels like. Sometimes they don’t even quite believe that the chronic pain patient is ill. “But you don’t look sick!” is a common refrain. For an estimated 25 million people suffering from chronic pain in the U.S., this can be discouraging and isolating. This is the main reason why spoon theory was conceived and why it is so important to chronic pain patients.
What is spoon theory?
Spoon theory was created in 2003 by Christine Miserandino. She was having lunch with a friend who had seen Christine suffering from lupus firsthand. Still, the friend had no idea how it felt to have a debilitating chronic illness. Grasping for a better, more concrete way to illustrate what chronic illness feels like, Christine grabbed all of the spoons off the table and all the tables around them. She handed the spoons to her friend, and spoon theory was born.
In her words:
“Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a ‘loss’ of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.”
Christine asked her friend to count the number of spoons in her hand and explained that they represented the day’s energy. She asked her friend to list the day’s tasks, taking away a spoon for every bit of energy used to complete a task. In her friend’s case, there were only six spoons (out of 12) remaining when she left the house for work.
By the end of the exercise, Christine’s friend was in tears, finally realizing how difficult chronic illness makes life.
Why is spoon theory important?
Spoon theory helps loved ones and friends realize that life with chronic illness means more than just dealing with a few extra daily aches and pains.
Again, in Christine’s words:
“[It’s] hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. [Spoon theory helps loved ones] feel that frustration. [It also helps loved ones] understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count ‘spoons.’”
Chronic pain patients often get very good at hiding their pain and coping, and spoon theory offers a clear way to show how this works. They are able to pull themselves together when they need to, but the price they pay is high. Rebound pain can send them to bed for days afterwards. Spoon theory can help family and friends understand this as well. If a chronic pain patient has ten spoons a day but uses 15 to attend a family reunion picnic, the following days will be challenging and require extra rest.
Spoon theory can also help combat the isolation that chronic pain can cause. The more people who are close to a chronic pain patient and can empathize with their pain, the less lonely chronic pain patients feel.
In addition to spoon theory, chronic pain patients can find support and empathy online through forums and other social media. Online support groups can offer tremendous benefits to ease the isolation of chronic pain.
Chronic pain patients who are out of spoons for the day may still be able to recline in bed and check in online. Setting up the computer so that the support group is a favorited page also helps make this easier.
Many chronic pain patients suffer from insomnia. Online support groups are available at all hours of the day and night.
Some chronic pain patients who choose online support groups do so to remain anonymous. This can be helpful if the patient lives in a small town and does not want their health issues broadcast through their town.
Variety and specialization
Online support groups offer empathy and understanding but also variety and specialization. Even the rarest of chronic pain conditions can find support online, as members come from all over the world. There is also a tremendous variety of life experience and circumstances that can help a chronic pain patient feel supported.
Christine Miserandino created spoon theory to help chronic pain patients name and explain their feelings to their family and friends. If you are a chronic pain patient and need a way to help your loved ones understand your experience, try using spoon theory like Christine did with her friend. Let us know how it went in the comments!