...The Spoon Theory
Anyone affected by a hidden condition or disability may well have come across the "you didn't look ill" mentality. It can be a challenge to lead friends and family to a point where they really understand. I found The Spoon Theory to be a wonderful, easy tool to help do this. If this is a new concept to you, then I urge you to read on...
The idea was developed by Christine Miserandino, a teenage girl trying to explain to a friend how her symptoms of Lupus affect her everyday life. It's very simple....each spoon represents energy and as energy is limited, so are the number of spoons available in any one day.Every activity requires a spoon...getting up, getting dressed, eating breakfast, taking the kids to school, driving to work...you get the picture. The more demanding the activity, the more spoons required. It's a great analogy that can help others easily understand why we have to choose our activities with care, and can only participate in a limited number of these activities in any one given day. A few spoons can be taken from the next days supply, but will obviously affect the number available for tomorrows activities.We don't have the luxury of wasting spoons.
It's worth taking the time to read her own words here. I hope she knows that she has helped an enormous amount of people articulate something that is really quite difficult to describe. A close friend gave me one of the best birthday presents last year...a very cute tin, filled with spoons. The symbolism of it caused a tear or two. So I'm a spoonie. I have limited spoons and if I spend a few on you then I've made you a priority :)
Claire,
ReplyDeleteThanks for spreading the word about this explanation. I see this in my daughter, who has narcolepsy with cataplexy. As the author notes, 'The healthy have the luxury of a life without choices, a gift most people take for granted.' It is so easy for those around her to not understand that if she gives up a spoon to go to dinner with friends, the rest of her evening and possibly the next morning will be affected.
I truly enjoy your blog and hope you continue spreading the word about narcolepsy!
Thanks,
Mark Patterson
mitdoc@aol.com
Thank you for your very kind words Mark. I'm sorry to hear that your daughter is affected by narcolepsy and cataplexy; I can't imagine how difficult it must be for her and your family. The spoon theory is a wonderful concept. I hope it helps in some way to explain her limitations to friends.
ReplyDeleteClaire