How do you feel about the attention you receive for your lupus/fibro?

Poll Started August 12, 2008 by Kara Erickson

You can select multiple choices on this one because some of us have mixed feelings!

How do you feel about the attention you receive for your lupus/fibro?

Choose all that apply.
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Comments

Results 1 - 8

  • Kara

    I have two opinions on this. First of all, I love spreading lupus awareness and helping educate people about it. But when I introduce myself to people, lupus gets set aside. Later down the road as they get to know me better, I might tell them about my condition. So on one hand while I am very open about lupus, I don't tell everyone right off the bat that I suffer from it. I'd much rather they know me as "Kara" instead of associating me with a disease.

    42 months ago

  • Sarah

    I am afraid that they will judge me, and treat me differently for having Lupus, and from what I have learned after having it for 10 years is that they do. :( But I have learned how to go about telling people so it doesn't sound that serious, or I am saying it in a joking matter so people do not freak out about it and feel comfortable joking around and laughing about it. I say "a day is wasted without laughter". :) Can't be so serious all the time. Embrass what you have and go with it!

    42 months ago

  • Tonia

    I'm pretty open about it. LOL, of course I don't just blurt it out when meeting someone-- Hi, I'm Tonia & I have Lupus!

    If it's in conversation or is relevant, I have no problem talking about it and explaining to anyone about Lupus. I find the humor in it as Kara does. If we don't laugh, we get mired down in the misery.

    42 months ago

  • Elyse

    I generally wait until I consider a person at least a friend before I tell them the real deal. But I don't hide it either.  When talking about weekend plans, I'll mention that I'm going to my lupus group, but keep it casual. 

    42 months ago

  • Christina

    Like Kara, awareness is a huge key and the word needs to be spread and a face put to the disease.  But I also tell folks after I get to know them unless it is for work or something like that.  I think that people are judgemental and ignorant to what the disease really is.  And after folks have gotten to know me for me then I am all about educating them.  For example, my husband and I started dating 4 years ago.  I was a single mom with one son who is Autistic and then me with Lupus...talk about making a man RUN!  LMAO.  So about 6 months in I knew he was the one and I told him everything about our family...and well on 8/8/8 we married!  He is still learning, but he loves me just as I am!

    41 months ago

  • Dawn

    I feel like I have to tell people sooner than I'd like to explain certain things.  I have a lot of doctor's appointments, I tend not to make a lot of plans on the weekends, I generally don't feel well - so when people say things like, "I hope you're not getting the flu."  Or "Oh, come on, you can go out with us tonight!  We're all tired, just suck it up!"  Then I have to explain...

    32 months ago

  • Ethel

    I don't mind talking about lupus to anyone that wants to know, but it is not the first thin I tell people about myself.

    30 months ago

  • Gladys

    Sometimes I tend to be overly outspoken about Lupus, however It's a Healing mechanism for me & I love to keep the Awareness going. I used to be afraid of negative comments but now i've grown to understand that not everyone knows about Lupus & i feel it is my duty to give them the PROPER knowledge about it.

    17 months ago

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