What does it mean to live with lupus?
What do you wish the world better understood about life with lupus?
It is a battle and hard so just understanding is great don't downplay a symptom or complaint just because you feel it silly
Every day is physically unpredictable
When we have to cancel plans of any kind is very detrimental to us no matter how we let on that it doesn't bother us. Not being able to be involved in the simple pleasures of life is detrimental to us. No matter how many times we say we are fine.
that is for sure, my niece will be having a bridal shower in August high heat outdoors… hmmm we already know what that means for me! It is so difficult and disappointing to do what we must. 
, oh goodness! I hope it's a lovely day for everyone but outdoor activities in August is a bold choice! I know sometimes, that's the best or only option. I hope they have plenty of cool drinks, shade, and fans for the guests. And I am sorry you will most likely have to RSVP your regrets.
Best, Erin, Lupus.net Team Member.
I couldn’t agree more, it is detrimental to us. It does get difficult to even maintain a friendship, at 65 years old it still upsets me Thanks so much for this post, got me thinking too.
