This will always be one of my favorite pictures: my 2 sisters, myself and my amazing Dad (who is now in Heaven), on my wedding day. You would never know if I didn’t tell you, but these are the faces of 4 people who have lived their lives with a chronic illness.
People used to ask me “Well, what’s Lupus?” and I always seemed to find a hard time explaining because “I looked fine”. I’m only 29. How do I explain to someone that I wake up feeling like I’ve been hit by a bus after sleeping for 12+ hours? Or that I wake up with both of my hands swollen and just have to force myself to keep moving every day because “I look fine”? How could I explain to someone that my energy level starts at like 50% in the morning, even though I’m only in my 20’s? What do I tell the person who is yelling at me for parking in a Disabled spot because my lung function is so low that I am constantly out of breath? Chronic illnesses are such invisible and silent diseases that it’s so hard to know who actually has one, or what they feel like. I can’t tell you how many times someone has told me “Well, at least you don’t look sick,” as if I should completely forget the fact that I still feel horrible.
I never liked explaining to people how I felt because I didn’t want the sympathy, but maybe bringing awareness will save someone else the hassle of having to explain their own chronic illness so here it goes…
One day while online, I came across The Spoon Theory written by Christine Miserandino which explains the PERFECT way to describe having limited energy using “spoons” as a metaphor. She, too, had trouble explaining to others what it was like living with Lupus.
Basically, for those with a chronic illness, you start off your day with 12 spoons of energy and you really have to use them wisely. Getting out of bed? That’ll cost 1 spoon. Want to take a shower today? Another 2 spoons. Need to cook and feed your family? That’ll cost 3 spoons. It’s not even noon yet and you’ve already used 6 spoons of energy. Can you imagine how quickly you would run out of spoons?
This is how those with a chronic illness have to decide what can be done for the day. On the flip side, most people who are healthy wake up with an unlimited amount of spoons and can usually do things without worrying if they will have enough energy to do the next basic task.
As soon as I found this article, I started paying attention to my day and the energy I used. Just last week, I had planned to re-organize our hallway closet. I knew that I needed to go to the store and purchase a new organizer. I woke up in a great mood with, I would say, a good amount of energy. I got up, brushed my teeth, fixed my bed, took a shower, made the kids breakfast. I even felt so well that I decided to put on my make up! As soon as I got dressed to head to the store, I felt drained. I sat on the couch for a break and ended up falling asleep for an hour. I barely even did anything and I was already so exhausted. I literally JUST got ready and cooked breakfast. How could I have been so unexpectedly tired? I ended up not going to the store, slept for the remainder of the day, and couldn’t even re-organize our closet. Sometimes your “spoons” recharge when you sleep, sometimes they don’t. Sometimes you need to “pull spoons” from the next day, but then the next day I will start off with even less.
I am so thankful to have a husband who understands my illness. There are days that I am so tired, he will do EVERYTHING for me around the house without having to ask. He doesn’t complain if I sleep in all day. He doesn’t complain when the house is a mess. He doesn’t complain if food is not on the table because he understands me, and I think that’s all anyone with a chronic illness ever wants.
Click here to read Christine Miserandino’s “The Spoon Theory”.
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