I have heard countless stories and even experienced it myself. I am talking about gaslighting judging, or shaming someone because of their medical condition. In many cases, maybe the person didn't mean for the comment to be hurtful but nonetheless it is. When I was newly diagnosed, I felt the need to over explain my condition, I felt like I needed to prove that I wasn't lazy. Also, chronically ill folks get accused of faking their symptoms. #disabled
My therapist told me not to waste my breath trying to convince folks because they wouldn't get it unless they were in the same boat. It took me years to get to the point where I no longer care what others think regarding this matter. In other words, you don't get it until you get it. #therapy #chronicallyill #chronicpain
For those well meaning souls out there, here are some not so helpful comments to say to a chronically ill person. Also, I think many folks are missing the word chronic. For most of us, our conditions are life long without cures.
"You are too young to be this sick. "
"Hope you get better soon."
"Have you tried yoga?"
"Have you tried being a vegetarian?
"Being tired and having fatigue are not the same thing."
I want to introduce the concept of spoon theory. I had never heard of this term until I became a "spoonie". Spoon theory is a metaphor in the chronic illness community. It describes the amount of energy both mental and physical required to complete a task. Spoons are a visual representation for a unit of energy. Each activity requires a certain amount of spoons. Once the spoon is used, it can't be replenished until rest is achieved. #spoonie #spooniesupport
It's the process used to ration the number of spoons used in a given day (pacing activities). The theory also seeks to improve empathy among the healthy community. Awareness of what it's like to complete tasks when facing chronic pain and fatigue on a daily basis needs to be talked about.
Pacing activities is very difficult to manage. It's a trial and error process of deciding what is too much versus what is too little. For example, if I choose to walk around a museum for hours, I will pay the price for the rest of that day and even the next few days because I will be so wiped out.
Healthy individuals have an unlimited supply of spoons compared to "spoonies" who only have a certain number to last the entire day. The term "spoonie" indicates persons with chronic physical and or mental conditions. This term is widely used on social media. #spoonielife #spooniestrong #spooniecommunity #spooniesunite