Category Archives: general

Spoons: Explaining systemic disorders

It is incredibly difficult for people who are in general good health and physical shape to understand the demands of chronic diseases and conditions. A lady named Christine Miserandino published the 20160117_153139-1Spoon theory, which is widely popular to explain energy/effort rationing. It is quite effective and while other examples can be used, the popularity and acceptance of this explanation simply makes it a more effective tool.

I have friends with whom I have never discussed this theory reference it when we are talking, so I truly love how people are starting to understand the concept of energy/effort rationing for those with chronic conditions.

However, the theory starts the understanding, but does not cover it all. Spoons come in all different sizes and sometimes, not only do we need more spoons, we need bigger spoons. Or we used bigger spoons. Sometimes, the spoons have holes that we don’t expect and have to compensate for. And sometimes (although not pictured), our spoons are actually sporks – and wind up hurting us.

It’s a humorous threat to kill someone slowly with a spoon….

because it hurts more and takes longer.

I can feel great, go shopping, and then not be able to walk from the car to the house. I have crawled into my house more than once. It’s humiliating, humbling, and necessary. My wonderful husband calls it “hitting a wall.” Can’t predict it. Just suddenly, my body says no ┬ámore. All the spoons disappeared into a black hole and stabbed me on the way out.

People with chronic conditions have to decide what it more important – pride or functioning. Of course, I speak of my own experiences and opinions – no one else’s. We have to learn how to ration our efforts and determine whether we have to take it slowly for several days in order to have a night out with dinner and a movie. We wind up cancelling social events, because at times, they are simply too much work. This often isolates us and stresses our friendships. And yes, people who love us should understand, but all too often, they simply stop inviting us, because we never show anyway.

This happens professionally, as well. We sometimes cannot make meetings – or cannot make them in person. We cancel events. Or we put so much effort into not risking our professional standing that we have absolutely nothing left for home. A common complaint from loved ones is “How can you have enough oomph to manage work, but you come home and can do nothing?”

Because it takes everything we have to get through work. We rely on home to be safe and we can stop faking, we can stop exerting so much effort just to be “normal.”

It’s hard on our loved ones who just don’t get it. They see us looking so healthy and accomplishing so much and feel that we are faking whatever it is we think we have – lupus, fibro, sjogrens, whatever…it’s just in our minds. ┬áTrust me, we would trade what we have to be “normal.” No one wants this. We don’t ask for it. It just is. And the emotional trauma of being accused of being hypochondriacs is truly stressful on us who are simply trying to live in a world that doesn’t accept us, trust us, believe us. Sometimes, this skewed view physically endangers us if it’s a case of not being able to get meds, stay on a schedule, see the doctor, get the test – whatever it is we need to address either the chronic condition or the acute issue. This attitude physically harmed my children when relatives refused to accept the situation.

So, I love the spoon theory as an entry point to understanding the complexity of our conditions. Just know, our conditions are so much more and spoons just start the process. But it’s a start. And no, you cannot loan us spoons, but you can give us acceptance and understanding.


- How much do you know?

at the Heart of Privacy

K Royal (@heartofprivacy)