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
www.singingpatientwellness.com - health coaching- visit this site to get a free e book on nutrition!
www.youtube.com/user/carlaulbrich- funny medical songs
3 comments:
Hi Carla,
Glad to have found you although it loooks like you have found my blog already...Lupus Hope...we sound like we're on the "same holistic page"
www.lupushope.blogspot.com
Girl, email me for some yummy and easy gluten free recipes! We'll talk soon! Lonedoggy@netzero.com
I can't thank you enough for posting this. I can't stop crying... but it's worth it!
I was just recently diagnosed with lupus a few months ago and still trying to work through a lot of the emotional baggage and "new normal" that comes along with it. And the frustrations of not being able to do the simplest things like fold my laundry that has been waiting for about a week.
And then the sadness that comes from not being able to really explain to my closest friends what is going on inside me. This helped so much and I can't wait to share it with my best friend today when, like the speaker said, she will drive up to see me and spend time with me because I'm too tired to go to her.
Thank you for this great site!
Hey Jen- I'm really glad you found the blog and extra-glad you chimed in with comments. I've had some really bad times with lupus, but I've found a number of things that have helped me get back on my feet and completely off the drugs. Things can get better!
Meanwhile, if the laundry doesn't get folded, it will not make that much difference.
Anyhow, laundry has a way of never being done- unless you are totally nude, there's always something that needs washing. Give yourself some love. Now is a time to rest. It's OK to rest! Hugs~ Carla
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