Someone online who has friends with chronic pain shared this link with me. It's a moving story and explains chronic pain so well. I thought I would share it with all of you :) It's from a site called But You Don't Look Sick.
Absolutely Brilliant!
Very good analogy.
I agree with Jackie Brilliant
Very, very good.
Nice, thank you for sharing!
Thank you for sharing this. How does one decide who to share this type of information with.
I am always torn between answering questions like this and having someone see me differently from that point on. Sometimes I feel that if they don't truly understand, after the current challenge or letdown is dismissed, they will have the same expectations. I know thats unrealistic to continue like that. But I also feel that those unrealistic expectations force me to hope or to try a little harder to make the most of each day. I do realize that by pushing too hard I keep taking something from myself both physically and emotionally.
I know what you mean. I am always afraid people will think I am "just being a drama queen" or wanting extra attention. And you are right, sometimes people will see the condition you have rather than you yourself.
wow-just..wow
I agree this is absolutely brilliant. I know I will be using this myself. More importantly, I have a friend with Lupus who I will passing this link to.
Elaine
This is a wonderful story and explanation of pain and capabilities written by someone with lupus. When I was dx'd with lupus in March 2010 it was one of the first assisting literature I read online and I find even today that it is still in wide use among lupies and I"m thrilled to see it's being utilized and shared with this group too. HUGS, Julie
You get a gold star for sharing this with us!!!!
Thanks for sharing this!
Is there a way to favorite or bookmark discussion posts? I'd like to somehow mark this post.
I just spent the last 20 minutes bawling my eyes out after reading this. It is so hard to explain and so hard for people to understand what a struggle each day is.
Thank you for helping me share this with those I care about and finally giving something that they might understand.
Doctors should read this. Many of them really don't understand. Mine really seems to, but I have friends who really struggle because their docs don't.
wow, this is super powerful and I shared it and folks are "understanding" now. It is so hard for me to share my struggles with others so this helps - no I can go back to pretending all is fine..
Remember it's not just for lupus though. It's for all with an "invisible illness".
Elaine Kobelka said:
I agree this is absolutely brilliant. I know I will be using this myself. More importantly, I have a friend with Lupus who I will passing this link to.
Elaine
I'm surprised to see so many who had never read this. Its so very common that fans of the story call themselves "Spoonies" and have support groups on FB, twitter, and everywhere. Many identify themselves as spoonies in profiles on their various websites. Each time someone says the word "spoonie", everyone else who has read it, knows that person is struggling with some chronic, painful, invisible illness. There is spoon jewelry in honor of the story, quotes, posters, jokes, all about "extra spoons". I'm glad that those of you who had never read it, have now read it! It doesn't explain ALL that we go through, but it's about as much as most people can comprehend without actually feeling our disease. I sure send this to a lot of people who are ill. I have not sent it to anyone of my family/friends who is not ill. I will do so if anyone shows enough concern to really want to know what I live with.
Porcelina I forgot to thank you for sharing it. I guess it should be shared often, for those who have not yet discovered it.
Sheila, we need to keep "BUMPING" this article up onto the leader board. I am sending you a boat load of imaginary spoons sweet friend x
Sheila W. said:
Porcelina I forgot to thank you for sharing it. I guess it should be shared often, for those who have not yet discovered it.
Aww, same to you Jackie!! Thanks! I need some extra spoons, I haven't slept since Saturday night and it's sure making me miserable, affecting every health problem I have.
Jackie said:
Sheila, we need to keep "BUMPING" this article up onto the leader board. I am sending you a boat load of imaginary spoons sweet friend x