If you’ve been following my blog for a while, you may have seen #spoonie or #spooniesister. So what does that mean? The spoon theory is used to explain our energy throughout the day. When you have a chronic illness, you may start with spoon depletion. Say you have 20 spoons at the start of the day. You choose to shower (5 spoons). You cook lunch or dinner from scratch (5 spoons). Then you go to work (10 spoons), by the end of the day, you’re completely out of spoons. All your energy is gone. This may impact the number of spoons you start with tomorrow. You may choose to borrow or conserve spoons in order to do something you’ve been looking forward to. It’s a basic way of explaining energy.
So why does this matter? Living with a chronic illness experience can be difficult to explain. In my day to day life, every day has its challenges. For me, I am “normal” most days although my “normal” has very different parameters. When someone asks me to do something, I often have to do mental math because what I do now has an impact on the future. I’ve been ridiculed by people in my life for choosing my battles. Now, I don’t think this criticism is born out of hate, it’s born out of frustration.
It’s difficult to understand why I would choose some activities over others. It’s frustrating to be at the mercy of something you can’t see, much less something you’re not experiencing. This is when empathy and understanding become extremely important for both parties.
I have chosen to hold on to certain experiences because they felt like personal attacks. That is my choice. I refused to extend grace and compassion. I felt heartbroken by another party’s lack of understanding. What did that do for me? It stole energy and took away from experiences and fun I could’ve had.
On the other side, I would hope you consider this if someone with a chronic illness tells you they can’t do something. It’s difficult to admit something is too much (at least it is for me). When you question why we can’t or even insinuate we’re being lazy or faking it, it feels a lot like medical gaslighting. You may not like that we have to make choices, but the truth is we don’t either. It’s easier for us to make them because we feel the consequence first hand.
It’s challenging to watch others go through what I’ve experienced first hand. It feels invalidating and hurtful. You end up angry, hurt, and feeling a little defenseless. Trust yourself. Others may not understand but don’t push yourself if you have to deal with consequences you don’t want. You know your body and no one else can advocate what you’re experiencing. Saying no doesn’t make you weak, it doesn’t make you lazy, and it certainly doesn’t mean you’re faking it.
I hope you come away from this article with a little more compassion. If you have a loved one with a chronic illness or you yourself have a chronic illness be considerate. Please respect yourself, love yourself, and care for yourself the best way you know how.