“You would feel better if you got dressed.”
“You can always take a break.”
“But the event is a week away.”
“Have you tried vitamins?”
“Ignore it and it will go away.”
“But you don’t look sick.”
We Spoonies are folks living with a variety of chronic illnesses that range from Lupus, MS, Chronic Fatigue Syndrome, Rheumatoid Arthritis, Fibromyalgia, Autoimmune issues, and a very long list of other syndromes, ailments, disorders, diseases and afflictions.
The biggest ordeal we face is explaining that, even though we look healthy, we can actually feel sick or be in pain. Those of us with an invisible illness contend with exhaustion, dizziness, pain, cognitive impairment, and a host of other maladies.
The “Spoon Theory” is a concept developed by Christine Miserandino. Christine, who has Lupus, explained to her friend what it’s like to live with a chronic illness by handing her a dozen spoons. She said to think of each spoon as a metaphor representing the amount of energy it takes to accomplish a single, ordinary, everyday task:
Getting out of bed in the morning equals one spoon. Dressing, making a meal, walking to your car, driving, taking a shower, running a vacuum, shopping for groceries, unloading a dishwasher, and other chores each equal one spoon.
Healthy people usually have an unlimited supply of spoons and can easily accomplish common day-to-day tasks. We Spoonies never know how many spoons we will have on any given day, which makes making plans and taking on ordinary tasks challenging.
Two of the invisible illnesses I deal with are Sjogren’s Syndome (a systemic disease that can affect any organ, tissue, duct, or joint) and Rheumatoid Arthritis, both autoimmune. They can cause pain, fatigue, and give me ‘foggy brain.’ The fatigue comes on very suddenly and is debilitating. Sometimes it may only last 24 hours, but it has lasted as long as eight weeks. When it hits, I am unable to think clearly or perform the simplest tasks.
My life as a Spoonie means I never know how I am going to feel, or if a new malady will suddenly appear. Several years ago, I developed autoimmune hives that lasted nine months. Seriously. No kidding. How do you explain you are allergic to yourself?
I hope you will understand when I cancel at the last minute, or say don’t count on me. It’s not because I’m lazy, self-centered or selfish; I just have a few illnesses I can’t control.
But, Hey! On the upside, I don't look sick!
The biggest ordeal we face is explaining that, even though we look healthy, we can actually feel sick or be in pain. Those of us with an invisible illness contend with exhaustion, dizziness, pain, cognitive impairment, and a host of other maladies.
The “Spoon Theory” is a concept developed by Christine Miserandino. Christine, who has Lupus, explained to her friend what it’s like to live with a chronic illness by handing her a dozen spoons. She said to think of each spoon as a metaphor representing the amount of energy it takes to accomplish a single, ordinary, everyday task:
Getting out of bed in the morning equals one spoon. Dressing, making a meal, walking to your car, driving, taking a shower, running a vacuum, shopping for groceries, unloading a dishwasher, and other chores each equal one spoon.
Healthy people usually have an unlimited supply of spoons and can easily accomplish common day-to-day tasks. We Spoonies never know how many spoons we will have on any given day, which makes making plans and taking on ordinary tasks challenging.
Two of the invisible illnesses I deal with are Sjogren’s Syndome (a systemic disease that can affect any organ, tissue, duct, or joint) and Rheumatoid Arthritis, both autoimmune. They can cause pain, fatigue, and give me ‘foggy brain.’ The fatigue comes on very suddenly and is debilitating. Sometimes it may only last 24 hours, but it has lasted as long as eight weeks. When it hits, I am unable to think clearly or perform the simplest tasks.
My life as a Spoonie means I never know how I am going to feel, or if a new malady will suddenly appear. Several years ago, I developed autoimmune hives that lasted nine months. Seriously. No kidding. How do you explain you are allergic to yourself?
I hope you will understand when I cancel at the last minute, or say don’t count on me. It’s not because I’m lazy, self-centered or selfish; I just have a few illnesses I can’t control.
But, Hey! On the upside, I don't look sick!
If you would like to know more about Sjogren's Syndrome, you are welcome to read my blog essay: My Day as a NIH Lab Rat
