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Lupus Awareness Month 2021

What is the most important thing you can think of to share about lupus awareness? What do you need people to know about your lupus journey?

  1. I've had to deal with it, day by day, because some days I'm fine, then the next day I could be swollen really bad, that's when I'm having my flare-ups. Have patience when people tell you (You don't look sick), just tell them to research Lupus and then they will have some knowledge on what goes on with people who have Lupus. Most likely they'll come back telling You, I'm sorry I didn't know what goes on.

    1. Some days all we can do is deal with our feelings and symptoms day by day. Often that’s the only way to deal with it. I also suggest people look up the spoon theory. If you aren’t familiar with it you should definitely check it out. After suggesting it I’ve had several people come back and tell me that it really helped. Hope you are doing okay today!!

      Amber (lupus.net team moderator)

    2. Very good points. Education is so important. I have to temper my responses when I'm not feeling well. Thanks for your comment. ~Racquel~ (lupus.net Team Member)

  2. I need them to know that when someone with lupus is angry or uptight it's not because they want to be it's because they're trying to tell you that it isn't the way they want to talk to you it's just something that they're going through and they don't understand why not to be mean not to be angry all the time it's just what they go through they just need to understand and feel like okay well she's not feeling good and I just got to put it past me when someone's angry and you know they have an illness don't take it too hard cuz they don't want to talk to you like that

    1. What a great point. Thank You so much for sharing!!

      Amber (lupus.net team moderator)

    2. So very true. It's hard to be sweet and nice when you are in pain. A most important point. Thanks for your comment. ~Racquel~ (lupus.net Team member)

  3. It a challenge some days when cleaning I got to sit down cause of my breathing swelling in my hands and foot and ankle

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