Monday, August 31, 2009

What's in a Name?

I think people who have lupus, or SLE, should have a name for themselves.

One reason I think we need a name to describe us is because I come somewhat annoyed at such names as "Lupus Victim" or "Lupus Survivor." I am not, nor have I ever been, a victim of anything, particularly of lupus. And yes, I am a survivor, but that connotation smacks of a lucky circumstance, such as " I survived a hurricane" or some other natural disaster.

I'm not mocking others that are proud to call themselves A _______ Survivor (fill in the blank with the name of a disease. They can call themselves anything they want. I just choose not to use those terms.

Now, I've seen the term, Lupie. Not so fond of that, either, because while it reflects a light-hearted touch, it also brings up the derogatory impression of someone who is a bit -- well, strange, or inebrieated, or "loopy."

So I herewith present some options I just made up. Read at your own peril.



Lupusette (for a woman)

Lupusor (male)






Well, you get the idea. It's late, and my nighttime meds have just kicked in and this Lupus person needs to get to bed.

If you have any suggestions for a name for those of us who have lupus, feel free to leave them in a comment. I promise I will take any and all names under consideration. Since I am broke, as nearly all of us with lupus are, there will be no prizes awarded. However, if I find one that particularly tickles my funny bone, I promise I will use that name in my next post here.

Have fun.



  1. I have heard some people call us "Lupites." It almost makes us sound like we are part of an elite group :) .

  2. Okay, that's a good one. And the elite group would be similar in sound to Luddites, or some sect where the women wear bonnets and long dresses and there is no electricity? Kinda sounds like a particular kind of meteorite, too... Superman's Kryptonite? After all, we do amazing things despite lupus.
    Thanks, Whitney.

  3. hi marilyn...
    my name is klaudya, and i´m mexican...
    i found your blog and im happy for it...
    i was diagnosed in may this year and im with all the prednisone issues :(...

    Answering your request, here we call ourselves "lúpica" or "lupic" if you want in english...

    and there is a group in facebook, called "lupitas"... that is like a short version for guadalupes... i think they use it because of the "Lup-" prefix... hahaha!,,, i guess...

    so, my english is not so good, i´ll be around, your experiences really will help me to understand a little more about our illness...(or, how can i call it?)

    kisses from mexico...

  4. Thank you for your comment. And I'll look for "lupitas" on facebook, too. Hope you get the information and treatment you need. Be sure and take good care of yourself.

  5. I don't know..I just know I'm sick of being sick. I'm sick of having to constantly adjust my meds. I'm sick of doctors. I'm sick and tired and I can't sleep because my skin is on fire and having racing crazy thoughts and can't relax. Feeling flu like starting at 3 p.m. everyday until I crash about 7 p.m.! The only other lupus name I can think of isn't for children's ears - LOL!!

  6. Jennifer: I hope you belong to a lupus support group somewhere around you or online, even. I belong to an online support group called LUPIES@yahoogroups and I get a lot of support and encouragement there....and good advice about doctors and meds, etc. I hope you are seeing a good rheumatologist. Emphasis on GOOD.
    Let me know if you want to contribute your thoughts, experiences, whatever, to my upcoming book. Email me at for more details. In the meantime, I hope you feel better soon.

  7. I just like "a woman with lupus" Puts the emphasis on being human first, dealing with an illness second.

    Also, not so much related to the name thing, I get a newsletter from the Women to Women clinic every few weeks (on a range of topics) and the last on was about lupus and menopause -- from links in the article I found other good articles on RA and lupus.

    Here's the link: Lessons from lupus — what an inflammatory disease can teach us about menopause (and vice versa!)