I defy anyone to ever find a better way to describe life with Lupus, please, please read. Copy to Facebook, printout for friends and family.

A really good friend posted this link on Facebook for everyone who suffers from or knows someong with Lupus, MS, Crohns, Fibromyalgia or anyother debilitating illness

16 Replies


This could not be explained any other way. It actually enabled ME to understand myselfwanm my owx limitations that much better!


Ditto Mandy, felt a bit of fol when I read it, knowing some of the ways I've tried to explain things to people. But as you well know having Lupus entitles us to be a bit daft and loopy!!! It really made me smile having such a great explanation, i'll be walking round with copies of this in my handbag for whenever those questions arise, as God knows my brain is rarely able to remember how to spell my own name...hehehe! Glad it helped. Rxx


OMG what a good theory.

I have printed out the PDF and I am sending to family and friends. I always have a problem with people who say 'but you look so well' Im going to keep one in my bag.....Thanks xxxxxx


You're very welcome. Think posting this link is one of the best things I've ever done. Still smiling after reading it myself. I hope everyone on the forum reads it whether they leave a comment or not, but thanks for yours. Rxxx


really good thank u xx


Thanks for posting -it's such a helpful analogy -have shared on facebook x



What a FAB way of explaning Lupus, even I can understand Lupus more.

Thank you lupussurivor :)


Fantastic....thank you for posting. I will try to use this to explain to family and friends as even after 3 years they still don't quite get it! x


I hate when I give a healthy friend/relative the spoon theory & they come back with "wow, that describes my life to a tee"!!!

Is the BYDLS site back up n running? If it is, check out the "sick humour"


Your welcome loopy-lou, hope it helps.

Nanuuk, I'm sorry you haven't had a more understanding and supportive response. I can only hope that this theory at least helped you in some way as it has me. Yes the BYDLS is back up and running, thanks for the suggestion, love anything that makes me laugh...laughter, I consisder to be a free medicine wthout side-effects...cheers :-)


What a fantastic read that was


What a wonderful story - I think I am like most people when anyone asks about my health - just say it's ok, thanks for asking - maybe I should keep this in my bag and when I say sorry, can't stay long, need to be back by 8.30 ready for bed at 9.00, and they just think I'm making excuses, I'll take my 'spoon' out of my bag and let them all read it - or maybe not, I think I tend to keep it to myself, rightly or wrongly.


I read this before on the American Lupus site, I think it is brilliant and showed it to my husband and he thought so too. There are some days when I feel like my spoons are halved before I even get out of bed, then there are others when I still have spoons left.


in a nut shell. makes me want to carry spoons around.

feed up with people saying " you look well and what a nice tan ( i have PBC as well).


Thank you xx


Just read this - great! - even a child could grasp this analogy for fluctuating energy levels!

I also liken having Lupus with experience in the sea...(part of my younger life was in Oz, where the waves are AWESOME!) Some days you are:

-treading water, paddling


-riding a wave (surfing) - these are the GOOD days

-battling against the flow (limbs aching,lungs hurting...)

-numb with cold/or boiling hot (burning)

-overwhelmed by a giant wall of water (intense pain,fear)

-sinking (despair/depression)

There's one after this....but I refuse to think about it at present!


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