I know what you mean. If I get one more newpaper article detailing the general symptoms of lupus from some well-meaning soul, I just might scream. I know people just want to help, but they don't know what I go through, and it makes no sense to them that everyone with lupus suffers a little bit differently. I've become an expert at smiling and nodding.
lizbet

Hi,

i am sick of people telling me how to take care of myself. I quit smoking a pack and a half a day. I get lots of sleep and I try to excercise. Beyond that I take care of my symptoms as they arise. I was in the hospital the other day with a sinus infection and a fever and someone I knew walked by and said how are you and I said i'm great. It's such a conditioned response for me now that I looked like an fool when I said that.

i guess people think they know what is best for me. Thanks for listening it was nice to vent.

Cheers,
jenn

I get more questions from people when they hear I have lupus. Some say they have heard of it but don't really know what it is. It's sad, they hear all about other diseases all the time, but very few have heard of lupus. ..Sharon

Hi guys,

i simply tell people this....

My immune system attacks my organs like theres attacks the flu virus. It can happen to any part of my body at any time and everyone is different.

This usually gives people some idea of how it works and they can relate to it. It also saves me from a long winded description that most people wouldn't understand anyways. If they have further questions I always answer as best as I can.

Cheers,
jenn

At one point, the support group I am associated with talked about making business cards that you could hand to people. The business cards would have a fairly simple explanation of lupus.

I think this idea has a lot of merit!
Ladybrannon

I have lived with lupus my whole life. My mom was diagnosed with it in her thirties. She is now 77. I have lived with the "flare-ups" and the mood swings, and the aching. Not knowing if it is hereditary scares me. They don't think it is but... You never know. I feel for those of you who have it. I call my mom everyday to make sure she is okay and see how she is feeling. I can't make it better but just hearing from me seems to help. I do know that she found a dermatologist who understands lupus and he actually help her move than her gp does. I can't offer much advice or help but knowing that your loved ones goes through it with you may make it easier or harder to bear but you're not alone there are those of us non-lupus patients who understand. I did my college thesis on lupus some 23 years ago when there wasn't as much known about it as there is now. Lots of luck to all you wonderful people.

Welcome ggjjs! Thank you for sharing another side of lupus...It does effect everyone around us.

I would love to hear more about your thesis that you did, if you are willing to share!

Hugs,
ladybrannon

Hi again,

I know what you mean about people who think they know more about lupus than my own doctors!
My sister is always telling me that she has heard about one vitamin or herbal remedy that is suppose to work, and I can quit taking all the meds i'm currently using, "because all those chemicals can't be good for me!"
I know she means well, but it gets very tiring repeating the same thing over and over, "i can't stop taking my meds because you think you have found a miracle cure!" she doesn't understand the disease, and doesn't want too. I don't know if she's afraid she might have it, and is in denial or what. All I know is I can't make her understand, and since we work together, it make it hard to get around her comments. When i'm not feeling well, if I say something or she notices i'm not well, here we go again!
Thanks for listening,
kris

Kris:

yes, i, too, have family members like that. Try this..."thanks, i'll think about it." most the time, they forget about it by the next time you see them again.

If they don't, say...Well I thought about it and it just doesn't seem like the right answer for me, maybe next time. Thanks though..."

anyone else out there have a way to handle it?

Hugs,
ladybrannon

Hello again,

thanks lady b, i'll give that a try. Maybe one of these days my sister will understand. if not, i'll just keep saying thanks but no thanks!

My mother was diagnosed with lupus about 20 yrs. Ago, and you would think she would understand, but she had decided that she has been cured. When I talk about my symptoms, or the meds i'm taking, she just says i'm wasting my money, because there is nothing wrong with me! I know it sounds crazy, but she has been taking lortabs for pain for about 10 yrs. Now, and when I ask her about that, she just dismisses the whole thing. So I really don't have much family support. My husband and kids know when I don't feel good and go to bed, no one is to wake me unless there is an emergancy.
So i'm really glad I found this group. Thanks for listening.

Kris