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JoAnna Johnson

"The Soul Stringer"

Random Rants of a Lupie Lady


Supporting Lupus...What NOT to DO!!!!

Posted on May 22, 2013 at 1:04 PM
I have received many favorable responses regarding some of my post on what NOT to do or say to people with Lupus. So I thought it would be a good idea to share them here.  I'm sure there is a lot more I could say..but you will certainly get the point.    ENJOY!!!

THE DON'TS!!!!!!
Keeping in mind the mental and emotional ramifications of the effects of Lupus. I think that it is very important to discuss a few of the don'ts when dealing with Lupus patients. YOU DO NOT WANT TO ADD TO THE MENTAL ANGUISH WITH A SLIP OF THE TONGUE!!!! SUPPORT STARTS WITH YOUR MOUTH!!!!

DON'T pretend to understand. Unless you don't. Just be empathetic and sympathetic. Heck...just be supportive!

Don't say..."But you don't look sick." This makes the patient feel as though you don't believe them. There symptoms are internal in many cases and are NOT always visible to the eye. (Although looking well to you is a compliment... deep down it is appreciated but often misunderstood by the patient)

DON'T say...."Maybe you should exercise more!" Having Lupus causes chronic pain and fatigue for many. Yes a healthy diet and exercise are essential for optimal health...but do you really think you are helping when you say that?

DON'T say..."Just don't claim it." I am all for positive thoughts, words, and deeds. But the reality is...when someone is feeling like they have just been run over by a MACK TRUCK...saying don't claim it is NOT realistic. Claim or no claim...every patient knows pain on a very personal level. And need I even mention the affect this could have on someone who has lost a loved one to this horrible disease???

DON'T offer some miracle herb that will "CURE" them of Lupus especially if it involves some pyramid scheme, network marketing, or some radical diet that will be too expensive for the patient to maintain... Sigh...There is currently NO cure for Lupus.

DO NOT...I repeat...DO NOT say..."My ________ died from Lupus." "My ________ had Lupus and they don't have it anymore." or any other comparison to someone else. All Lupus patients have some similar symptoms, but each person is different and their choices of treatment and response to treatment will differ.
#PleaseShare #LupusAwareness #stopwhisperingandYELL!!!

Categories: Random

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Reply Joseph Scott
12:01 AM on October 14, 2022 
Reply I'm pretty sure you misspelled the word "extroardinary" on your site. You might want to check out a site like or which have helped me with problems like this in the past.
4:09 PM on October 21, 2022 
I'm pretty sure you misspelled the word "extroardinary" on your site. You might want to check out a site like or which have helped me with problems like this in the past.