I Didn't Choose The Spoonie Life, The Spoonie Life Chose Me: Life With An Invisible Illness
Life with a chronic and invisible illness.
Chaay_Tee / Shutterstock Sometimes, I suspect my mother thinks I’m exaggerating my symptoms. It doesn’t make me angry. If I wasn’t living in this body, I’d probably have doubts, too.
Contrary to what she or anyone else might think, I’m not malingering when I spend the majority of my day doing little and sleeping as much as possible. I’m not exaggerating the experience. I’m suffering — like many other people with chronic and invisible illnesses.
Spoon theory has become one of those if you know, you know concepts. I knew nothing about it until I developed a chronic illness a few years ago. I didn’t choose to be a spoonie. The spoonie life chose me.
It didn’t start with my diagnosis. It started months before when my usual Type-A personality took an energy hit.
I’d have days where I felt disconnected and in pain, days when I didn’t have the energy to do everything — or sometimes anything — I’d planned. The brain fog was intense, and I had trouble focusing on what people were saying. I couldn’t remember basic things, and I couldn’t understand why my work and life performance were suddenly suffering.
A friend referenced spoon theory, and I headed to the Internet to learn about it. What did it mean when she said she was out of spoons? I knew she wasn’t talking about utensils.
What is Spoon Theory?
Spoon theory comes from an article by Christine Miserandino when she explains how she helped a friend understand what it’s like having lupus using spoons. She gave her friend 12 spoons and explained how healthy people get an unlimited number of spoons, or energy, each day. When you’re healthy, you get to wake up and decide what you’re going to do — and then you do it.
When you live with a chronic or invisible illness, you wake up each day with a limited amount of energy. You have to pick and choose what you’ll do that day because the energy doesn’t just renew itself. You have limits. Simple tasks like taking a shower could consume the energy of one spoon out of the dozen you’ve got. You could use half your spoons before you even make it to work.
Basically, spoon theory helps conceptualize what it’s like to have to budget your time and energy. It’s something healthy people don’t really have to do. Because my illness is cyclical, I get to experience health privilege for a fraction of the month, and then for the rest of the month, I’m left counting my spoons.
If I’m honest, I didn’t want to be a spoonie. I’d love to go back to having an unlimited amount of energy to get me through the day. But on days when my premenstrual dysphoric disorder, or PMDD, kicks in, I know that I have to adjust my life accordingly.
Sometimes, I’m in pain. Without my antidepressants, I get severe suicide ideation. I have depression and heightened anxiety. I get body aches, brain fog, and overwhelming exhaustion. Sleep helps, but I’m a single parent. I have work to get done and children to take to their extracurricular activities. I have a dog who needs me.
I’ve learned that when I’m in the grips of my illness, I have to reduce my workday, outsource my yard work, and have easy pre-made meals I can throw in the oven without thinking about it. I have to spend my healthy days doing more so that I can cover the days I have to do less. I’m reserving my spoons by minimizing my responsibilities. I know that I’ll need every spoon I’ve got to make it through the tough days.
And I know I’m lucky. Many people don’t have any healthy days. What I have is health privilege part of the month — something most of us only appreciate when it’s gone.
Are You a Spoonie?
Spoon theory is an exclusive club. If we had a secret password, it might be “the struggle is real” or it might involve a string of four-letter words to communicate the frustration of only having so many spoons to go around. It’s the kind of club you don’t ask to be in and would probably love to escape. It chooses you and no amount of hearing “everything happens for a reason” will give you peace about that choice.
Spoonies can have many conditions and illnesses — including mental illness. The theory’s creator has lupus, an autoimmune illness. I have PMDD, a disorder that is often mistaken for bipolar disorder but is linked to the menstrual cycle. Whether you have a diagnosis or don’t, there are some signs you might be a spoonie.
- You wake up exhausted no matter how much sleep you get.
- You experience chronic pain.
- You have to budget your energy to get through the day.
- You’re regularly told “but you don’t look sick”.
- You have an extensive home pharmacy complete with over-the-counter and prescribed medication in addition to herbal remedies.
- You find yourself regularly educating people about your diagnosis.
- Basic life tasks — changing clothes, showering, picking up after yourself — fill you with exhaustion and deplete your supply of energy for doing other things.
- You are the owner of at least one pill caddy for dispensing your medication.
There are many other signs. Spoonies often have to deal with the disbelief of people who have never had to count their spoons a day in their lives because they have plenty to go around. We’re not embracing the theory because it makes us feel special. Most of us refer to spoons to help healthy people better conceptualize what it takes for us to get through an average day.
If you know and love a spoonie warrior, don’t tell them that they don’t look sick. Don’t encourage them to do more than they feel they can. Spoonies need unconditional love and support — just like anyone else. We also need a little compassion and flexibility from the people in our lives.
Being a Spoonie is something I never wanted. Yet, this community has taught me how to advocate for myself and how to practice better self-care. I don’t take my health for granted anymore. I don’t have that luxury. Instead, I have spoons.
Crystal Jackson is a former family therapist who writes across genres to encompass blog posts, poetry, short stories, children's books, and literary fiction.