Janelle Kono

As I reflect over the past year, it was both a wonderful year of wonderful things like adding a new puppo to the family and moving into a house we love, and also a really tough health year.

I have learned a lot of things that I wanted to share in case you’d like to learn how to better love and understand someone living with chronic pain and chronic illness like me!

1. A big change is that after lots of thinking and learning and talking to people in my life, I have decided to officially embrace the term disabled. I learned that I fall into the invisible disability category which comes with some privileges and also it’s own set of challenges (like people doubting whether or not you’re really in pain or you just don’t want to work - which for the record does not happen at my current work which is wonderful at accommodating me but has happened in the past and sucks a lot)
2. During my research into disability, I learned of the idea of glorifying a disability. I’m not “so brave” for living with chronic pain. I don’t “struggle” with migraines. My condition does not need to be described with positive or negative words, it just is. I have chronic migraines. I live with chronic pain. I know you “don’t know how” I do it because I don’t either - it’s a lot of putting one foot in front of the other. Using terms of the saintlyhood of a person for simply existing with a condition is weirdly demoralizing and really awkward. Instead, I prefer if you encourage me in terms of my reaction to my condition such as “Janelle I admire how you didn’t yell at that customer even though you’re in a ton of pain and they were being ridiculous” but not everyone might prefer that. If you aren’t sure, it’s better to have a conversation about what is meaningful to them