Christine Miserandino, an award-winning blogger, coined the phrase spoonie to describe her struggle with Lupus. However, there are many endometriosis patients who also consider themselves spoonies.
What is a spoonie?
A spoonie is anyone who easily gets their energy depleted due to their chronic pain. Miserandino explained her struggles to a friend by placing a handful of spoons on a table to symbolize her daily energy reserves. She explained how any activity — no matter how simple it seemed — would take away a spoon. Showering. Eating. Sending a text. Getting out of bed.
Spoonies struggle to make it through each day because their pain constantly drains their energy. Here are a few signs you can consider yourself a spoonie:
1. Most days, you don’t bother to get changed. You stay in pajamas. You try to find pairs that pass as ‘normal clothes’ so you can wear them in public without drawing attention.
2. You have spent a lot of money on high-quality blankets, pillows, and mattresses because you spend most of your time in bed. You try to make yourself as comfortable as your pain will allow.
3. You have an oversized pillbox in order to keep track of all the medication you are supposed to take throughout the day. If you plan on spending the day out of the house, you have to lug around a bag as big as a suitcase in order to fit all of your medication inside.
4. You spend more time talking to your doctor than your friends. You are always on the phone with them, booking appointments and asking questions about whether what you’ve been feeling is normal.
5. You know the names of pretty much every nurse at the hospital. You know the best parking. You know the best seat in the waiting room. You have visited enough times to know the place as well as your own home.
6. Your friends have slowly stopped inviting you out with them because you never say yes. On the rare times you are able to meet up with them, they don’t take your health complaints seriously. Some of them think you are overreacting. They think you are lazy. They don’t understand what you have been going through.
7. When you have an appointment to make or a class to attend, you wake up extra early. You have to give yourself a pep talk in order to get out of bed, brush your teeth, and get changed. Those two-minute activities can take you hours.
8. You have perfected your I’m fine face. Sometimes, you feel like you have to hide your pain in order to avoid ruining everyone else’s fun.
9. The smallest activities exhaust you. You need a nap after cooking a microwavable meal, taking a quick shower, or mopping the floor. You are lucky if you cross off one item from your to-do list per day.
10. Most of your friends are online friends. There are communities of spoonies who support you and understand you better than anyone in your ‘real’ life.
11. You are always tired. You have trouble keeping your eyes open throughout the day. All you want to do is sleep. However, as soon as you slip into bed at night, you have trouble getting any rest.
12. You have to be extra careful with how much money you spend. You cannot go overboard with frivolous expenses because you need to save enough to afford all of your medications.
13. Pain has become a constant for you. You don’t wake up wondering whether you will be pain-free. You wake up wondering which part of your body is going to hurt that day.
14. You get excited over completing little, mundane activities other people take for granted. Getting out of bed without hitting snooze. Folding a pile of laundry. Texting a friend back. Answering the door. Small achievements are big deals for you.
15. You live in the moment because you’re never sure when the pain will intensify and keep you stranded in bed. You try to make the most of your good days. You try to enjoy your life as much as possible.