I didn’t consider myself a spoonie until recently.
Even though I fit the definition for many years: I live with a chronic illness, which causes chronic pain. My energy levels fluctuate from day to day, and oftentimes, minute by minute. Certain daily tasks, such as showering, use up a lot of my energy. The intensity of my pain varies, making it difficult to make, and keep, plans. My body doesn’t always function the way I want it to.
The term “spoonie” comes from the Spoon Theory, an analogy used to describe the amount of physical and mental energy a person has available each day. The theory was developed by Christine Miserandino. While out to lunch with a friend, Ms. Miserandino used the spoons on the table to explain to her friend what it’s like to live with a chronic illness, in her case lupus. Each spoon represents a finite amount of energy. Every day you wake up with a different number of spoons available, yet there are still certain tasks—getting dressed, preparing a meal—that need to be completed on a regular basis. While a healthy person may begin the day with an unlimited number of spoons and uses only one spoon at a time for the most basic tasks of the day, a spoonie may start the day with only five total spoons and has to make decisions about which tasks absolutely must be completed that day and which tasks can be skipped. Because when the spoons are gone, so too, is a person’s energy to do anything else.
I didn’t consider myself a spoonie, because I didn’t think I had the luxury of being a spoonie. Other people with chronic illness could rest in preparation for a big day (a trip to Disneyland) or rest after a more physically-intensive day (decorating the house for the holidays). But not me. Too many people expected me to be there for them—my son, my husband, my parents, my students. I erroneously assumed those who identified as spoonies didn’t have as many obligations as I did. It didn’t occur to me that spoonies could also be full-time working-out-of-the-house parents and spouses like myself.
But that’s only part of the reason I rejected the spoonie label for myself. Looking deeper, I can admit the truth—I didn’t want anyone to see me differently, as if I was damaged goods. Somehow I had gotten it into my head that I wasn’t supposed to admit I needed to rest. I believed I wasn’t supposed to ask for help, or admit just how hard daily life was for me. For most of my life, I prided myself on my self-reliance, my busyness, my ability to do so much, and do it well. I expected myself to just keep going, no pause or naps needed.
I ignored all the advice mothers, women, caregivers hear so often—you can’t take care of anyone else if you’re not taking care of yourself. You can’t pour from an empty cup. You have to put the oxygen mask on yourself before putting it on your young child. I knew all this. I just didn’t fully believe it.
Plus, I was afraid. Afraid to give up control and my carefully constructed routines and schedules. I had lost my teaching career, retiring due to my illness. I couldn’t lose my household and family roles as well. Identifying myself as a spoonie would mean there were things I couldn’t do, because I was out of spoons. I was afraid to speak the words out loud, afraid it might become a self-fulfilling prophecy. If I told my husband I didn’t feel up to emptying the dishwasher, I felt as if I was telling him I could never again empty the dishwasher. In my mind, something that felt hard to do on one particular day would then become something that was always hard to do. I was firmly planted in the land of denial, unwilling to admit I needed help with some of the more basic, routine tasks I had never thought twice about.
But now I’ve come to the point where I have to admit the truth—I don’t have an unlimited well of energy and strength. In the last couple of years, there has been a definite change in what I can and cannot do. Is it a result of the natural progression of my autoimmune disease? Is it a result of my years of stubbornness and refusal to slow down? No one knows. I just know that currently my legs aren’t strong enough to keep going and stay upright for as long as I’d like them to.
There is a pattern that, only in hindsight, now appears quite clear to me. For many years after my diagnosis, I didn’t describe myself as “disabled.” Disabled people needed some sort of assistive device. Disabled moms don’t play handball with their son. Disabled wives don’t go for a forty-five-minute coffee walk with their husbands. Disabled patients don’t park three blocks away from the doctor’s office building simply because the residential street offers free parking. That line of thinking worked for me for a while. Until it didn’t.
Choosing to define yourself as a spoonie is an individual decision. It is not a medical term bestowed upon you by someone else. Other terms, such as disabled and chronically ill, are assigned to us by those in the medical field. No one will call you a spoonie, until you decide to call yourself one. Being a spoonie was fine for others, but I didn’t think it applied to me. Until there was no denying that it did.
This gradual shift in thinking coincided with me noticing small cracks in my well-established roles. For one, my son is a high schooler. While he still needs me to take him to and from school and occasionally help with homework, he’s capable of doing so much himself. But the biggest change was the one I couldn’t hide or pretend it wasn’t there. The strength and endurance of my left leg is at an all-time low. Scans of my knees, especially my left knee, show a major deterioration of cartilage, and doctors have warned that knee surgery may be in my future. I could no longer power through everyday tasks.
I never want to be a person who is solely defined by her chronic illness, which is another reason why I resisted the spoonie label for so long. Just as I don’t solely want to be defined as the mother of a biracial child or the wife in an interracial marriage. They are a part of me, for sure. A big part of me, a no-ignoring-it part of me. But they’re not all me. Likewise, I don’t want to be solely known as the woman with an autoimmune disease. I thought if I admitted out loud how hard things have gotten for me, how limited my physical stamina has become, I would be crossing over some imaginary threshold. One that there is no coming back from. One where I am not merely in a bad flare, which is temporary, but one in which there is no hope for a long-term remission.
But that’s not how it works.
Identifying as a spoonie allows me to treat myself a bit more gently. Of course, I feel wiped out after my nightly shower and so tired while preparing dinner. Many spoonies experience the same thing. Obviously, the number of hours I slept the night before does not necessarily correlate to how well-rested I feel the following morning. Spoonies understand that our fatigue isn’t relieved by a solid eight hours of sleep. When I look at it this way, identifying as a spoonie, joining this club with others who are chronically ill, means I’m part of a supportive, understanding community.
Though I have lived with a chronic illness for almost fifteen years, none of my doctors have discussed the Spoon Theory with me. Likewise, no doctor has ever spoken to me about pacing or resting up before a big activity requiring many spoons. I learned these things from fellow spoonies.
Understanding that other spoonies share a similar experience has allowed me to begin to shift my thinking. I am not weak. I am not inferior. I am not weird.
I am a woman living with a chronic illness causing chronic pain.
I am a spoonie.
Wendy Kennar (she/her) writes to make “invisible” disability visible and to connect with others. Wendy is currently researching publishing paths for her memoir-in-essays.
Website – Books, Boys, Bodies: www.wendykennar.com
Instagram: @wendykennar