One of the many frustrating things about having lupus, or any chronic illness, is trying to communicate to others what you're going through. When the disease is active, we often look better than we feel (thank heavens! it's one thing to look like crap, but who wants to also look like crap?), and some days we actually feel better than others. But the fact is, if you're struggling with an active chronic illness, life is different after diagnosis, and it can be hard to clearly explain your situation to "earth people."
If any of you have not seen or read or heard The Spoon Theory, you're in for a treat. This is blogger/ sepaker/ patient advocate Christine Miserandino's account of finally being able to explain to her best friend what it was like to manage very limited energy. The spoon theory is widely popular among those with chronic illness, because it seems to finally put into words what all of us at some point have struggled to communicate. Here it is being read by Christine herself
I couldn't agree more with this: it can be a gift to have something in your life that forces your to live more deliberately. Thanks to Christine for this great explanation- a leap forward in communicating from both sides with empathy, compassion, and greater understanding.
Carla Ulbrich, The Singing Patient and Health Coach
If any of you have not seen or read or heard The Spoon Theory, you're in for a treat. This is blogger/ sepaker/ patient advocate Christine Miserandino's account of finally being able to explain to her best friend what it was like to manage very limited energy. The spoon theory is widely popular among those with chronic illness, because it seems to finally put into words what all of us at some point have struggled to communicate. Here it is being read by Christine herself
I couldn't agree more with this: it can be a gift to have something in your life that forces your to live more deliberately. Thanks to Christine for this great explanation- a leap forward in communicating from both sides with empathy, compassion, and greater understanding.
Carla Ulbrich, The Singing Patient and Health Coach
http://tinyurl.com/348hroc - Carla's book