Running on Fumes
Living with a disability, chronic illness, chronic pain, or mental health condition can leave you drained and exhausted. Some days you may not feel as though you have enough energy to make it through your to-do list or responsibilities.
Explaining to family and friends what it’s like to go bravely about your day despite how you feel may seem frustrating or impossible. We often here in therapy how difficult it is for our clients to convey to the people around them what they are experiencing at any given moment. After all;
How could they understand your inner world?
How could they understand that every decision you make has to be weighed & considered based on how you’re feeling that particular day or time?
Your gas tank seems to have a hole in it sometimes … draining your tank and leaving you running on fumes. Your experience with whatever condition that is part of your life is yours and yours alone. Individuals with the very same ‘diagnosis’ or condition can experience it in quite different ways. Even though the thought of trying to explain what you deal with on the daily may seem daunting, it can be a huge relief when you open up and feel truly heard or understood by another person.
One creative, yet easy-to-understand way I have found to discuss with people what it’s like to have a limited amount of energy for “normal” things throughout the day is using the Spoon Theory.
You might be thinking, “What could spoons possibly have to do with what I am going through”? Christine Miserandino, after a long term struggle with lupus, came up with Spoon Theory as an accessible analogy for people without chronic conditions to understand what it’s like to live with one. Accentuating how limited energy is part of that package deal.
How much is one spoon of energy worth?
Essentially, in order to explain what it is like to run on limited energy supplies Spoon Theory uses physical (or imagined) spoons to represent the limited amount of energy a person has for one day. Every task, no matter how small, takes up one or more “spoons” in order to complete it. The idea behind it isn’t necessarily that this idea is backed by research or that those 12 spoons is some magic number, it’s about conveying to another human what it’s like to have to CHOOSE what to do with YOUR time & energy, knowing that you have to get certain things done that will sap up what little energy reserves that you have. And that no matter how much you may WANT to do something that you may not always be ABLE to follow through.
This might include knowing that you don’t have enough energy to both cook dinner and clean up after, or having to choose between going shopping or exercising. You might be able to make three phone calls, but they will leave you too exhausted to get a shower. Spoon Theory gives another person the visual of the difficult choices that someone with a chronic disability has to make on a daily basis. Having to forgo certain activities may make them feel lazy or inferior, and unfortunately others may be judging them because of it.
Invisibility in Disability
You might be thinking to yourself, “Well, everyone has to plan their day and allot time accordingly, right?” This is where the invisibility of disability comes into play. Some people simply do not “look” as though they have a disability, but they struggle with low energy, physical and emotional pain, and carry weights that no one else can see. Whereas other people don’t have to think much about their energy levels throughout the day or about how what they ‘can’ accomplish through the day being controlled by some invisible cap. The privilege of abled-ness entails NOT having to hyper monitor energy levels so closely and having to worry about how such minute details as spending 15 minutes with friends can impact the overall abilities of their day. For example, the developer of the spoon theory gives the example of how if her hands hurt, wearing clothes with buttons is not an option for that day. Not everyone has to deal with that type of reality.
Types of ‘draining’ invisible disorders:
- Chronic Fatigue
- Auto-Immune diseases
- Heart Conditions
- PTSD/Trauma experiences
So Where Do Spoons Go?
What activities drain energy can be different from person to person. Remember, even though the above examples given say you start each day with 12 spoons, there could be days when you start with none or anywhere in between. Sometimes you might not know how many spoons you have left just because of the nature of the condition you’re dealing with. Getting out of bed, getting dressed, taking medication, and watching tv may seem like they are pretty low-energy activities, but they could cost you 1 spoon each. Add in a few of the ‘higher spoon activities and you can be shut down for days.
High Energy Draining Activities
- Going to work or school
- Going shopping
- Going to the doctor
It’s important to remember, though, that the spoon theory is an analogy, a metaphor. It is not set in stone. Some days doing light housework may not cost you 1-2 spoons, other days it may cost all you have. Energy levels and the spoons required for certain activities can vary on any given day. If you are living with a chronic condition and you don’t feel like the Spoon Theory adequately captures your day-to-day functioning, that’s ok too! It’s just a visual tool to hopefully help some people get a glimpse into what it might be like to experience what you are going through. So, what can you do if you have a limited amount of energy/spoons?
Learn to Guard Your Spoons!
That’s right! It’s OK to be stingy with your spoons!
Self-care is extremely important for everyone, but especially if you are living with a disability, chronic illness, chronic pain, or mental health condition. This may mean that you will have to get good at saying “NO,” even when you might want to say “YES”. Depending on the condition you’re living with, overexerting yourself could be dangerous to your immune system and overall well-being. Beating yourself up for not being able to do certain things is depleting the limited energy that you DO have. You might not be able to build up a reserve of spoons, but by decluttering your schedule and working to balance with de-stress activities, you can make the most out of the spoons that you do have!
It is important to keep in mind the toll that emotional stress, self criticism and unrealistic expectations of yourself can have on your overall physical self and abilities. Use this blog as a new tool to discuss with friends, family, or formal supports about what you are going through as you deal with limited energy reserves. If possible, use it as an ongoing metaphor to convey how you are doing on a day to day basis. Telling someone that you “just don’t have enough spoons left” can take the pressure off of feeling like you are failing or disappointing them in some way. Let them help you learn to manage your spoons and create a balance between self-care and activity.
Need Help Balancing Your Spoons?
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Blog Credit: Natalie Drozda, MA, LPC is a PH.D student in Counseling Education and Supervision at Duquesne University and soon to be clinician at Angelus Therapeutic Services.