Julia said 10 years, 7 months ago:

Have trouble explaining to others what your daily life is like? This article talks about a woman named Christine Miserandino who finds a way to explain what it’s like to have lupus in a way that her friend could understand and connect more. The method of explaining can be used for a whole lot of conditions and syndromes or diseases, not just lupus, so if you ever didn’t know how to put things into words that can make sense to a friend or family member, might want to read this beautiful, heartfelt story.

http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/

I posted the link to the website of the story just in case it was frowned upon to recopy into a forum post. If you’ve ever heard the term “spoonie” used for people with chronic (pain) syndromes it had originated from the story.

Hope it helps someone! Feel free to share your stories about getting your friends and family to understand you or comment on how the whole thing makes you feel.

Good luck spoonies!

Julia said 10 years, 7 months ago:

Thank you Jess! I like your rationalizing, it does make sense to use something more exciting. I think it makes people see how much anyone can be going through at any time even though we can’t see it completely. Invisible illnesses can be anything that gets in the way of life that other people can’t immediately see and most illnesses are considered invisible, so I think it’s important for people to be able to understand.

Feles-Mala1327 said 9 years, 6 months ago:

I love the spoon analogy. My mother (who suffers with mental illness as well as a condition called Hydradenitis Supperativa) and I (mental illness and double lung transplant recipient) use the spoon analogy alot. Mostly between ourselves, but our housemates get it too. Mum told me she was out of spoons the other day, so I went to the kitchen drawer and pulled out the biggest silver desert spoon I could find and handed it to her. It was worth it just to see the smile on her face coz she understood and knew I cared and would help with whatever I could. 2 days later we had a 6 hour trip and as she was packing her bits and bobs off the table she picked up the spoon (which she had kept by her seat since I handed it to her) and said “I’m gonna need this, I’m taking it to Sydney” and popped it in her handbag.