Hi, I'm a spoonie*.
I suffer from a chronic illness that affects me every single day. It changes how I approach tasks in my life, people in my life, and most of all, myself.
I can't explain why I'm sick so I try not to let on that I am.
I have a hard time explaining exactly how I feel, because feeling this way has become so common that I forget that most people don't feel this way.
I don't look sick, so I insist that I'm not.
There is nothing you can do to make less sick, so I don't want you to know how sick I am.
And, most importantly, my energy is a very tangible thing that comes and goes. Tasks cost a certain amount of energy, and I am sometimes forced to pick and choose what I can get done. I'm always a spoonie; my energy is always a tangible thing that I must ration out. Tasks always cost energy. However, some days I have more than enough. I don't even think about it. On good days, I wake up, get stuff done, and go non-stop. Other days, I sleep in my clothes because climbing the stairs to go to bed took the last of what energy I had. There are mornings that I wake up and I just know right away, that it is going to be a "low spoons day"; That I quite simply do not and will not have enough energy to get through everything the day is going to throw at me.
It's taken me a long time to fully identify as a spoonie, but when I realized each of the above points, and realized that most people don't feel these ways, I was forced to admit it to myself. No matter how much I wish it wasn't so, I am sick. However, I don't want to use it as shield or an excuse. It is no reason for me to be rude or cold to people. I want to keep communication open, and help raise awareness for everyone who feels the same as I do.
As I said before, there is nothing you can do to make me less sick, but there are things you can do to make my life easier.
I know it doesn't make a lot of sense, but I'm not laying on the couch in my sweats all day because I'm lazy. I know it's hard to see, but I'm not dragging my butt and blinking awake because I didn't get enough sleep last night. I may tell you I didn't get enough sleep, but that's because I only got seven or eight hours of sleep. On a low-spoons day, I need ten or twelve.
It's very hard for me to be open about my spoonie things, because I am afraid of judgement. I know exactly how it looks and how it sounds. I know I seem lazy and unmotivated. I know that when I spend a whole day on the couch, you don't instantly think that I'm sick and fighting a chronic illness. When I take the time to explain everything, most people are kind and understanding, but sometimes it just seems like too much work to explain.
All I ask of everyone around me is a little understanding. A little grace and kindness go a long way. And not just towards me. Anyone who fights a chronic illness or an invisible illness probably feels the same way, and they probably haven't explained it for the same reasons I wasn't.
* Spoonie is a term adopted by those who suffer from chronic illnesses to identify as. Key indicators of a spoonie are: 1) The term "But you don't look sick". 2) Having a tangible level of energy that one must "ration" out. Frequently contemplating what a certain task is worth, and if one has a enough energy for it.