My crazy Friends
I tell you what folks, i have some of the strangest friends. I ran into one friend/ relative and in the course of catching up with her i told her of my Lupus Dx. She put her arm on my shoulder and said " Whew, at least it's not anything bad. I have a couple of friends who have Lupus and they've never had a problem. It's nothing to worry about really.
I said,are you sure it's Lupus they have? And she said yeah all you have to do is stay out of the sun. Lupus is such a minor thing.
I seem to be getting alot of that from friends and even family. At first it kind of hurt my feelings,because i have really been sick this last couple of months. And i dont go around telling everybody. Just a few close friends and family members. I'm one of those people that hardly ever gets sick and i have really taken care of myself. Very few people have ever heard me say i am in pain. So it's not that they are used to hearing it from me. I think i may be having myself a pity party here. I know alot of you are a lot worse off then me and i really do hate to come on here and bitch about how uncaring people are . Thank God for my husband, he cares enough to make up for all the rest.
Sorry to hear that you're getting that, but I completely understand! Pretty much got the same thing from my grandmother, "Well, I knew so n so who had Lupus. They were fine, they just had to take it easy every once in a while." Or even my mother! My sis in law is now sick & they think it's something autoimmune. "She's on steroids & her doctors changed her diet and have her on a strict workout program! She walks 3 miles a day!" OMGosh! I wish I could walk 1 mile a day w/out paying for it for the next week!
Sorry, going off on a tangent! Maybe you could forward them a link, or print out some info on, to the Lupus.org site, has all the info on it about what Lupus can/does do to a person. Or there is always the "Spoon Theory". I know having a caring/good hubby helps - I thank God for mine everyday - but it also helps to have other people understand. (((HUGS)))
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I think alot of us get that pretty much because no one unless they have this knows what we go through because sometimes it does not show on the outside how bad you feel. This is why we are here for each other. Bonita
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Thanks Red and Bonita. Yes it does make one feel better just to know that people care about you and i am so glad that i found this site. I may not post every day, but every morning and evening i get on here and read everyone else's posts and it helps so much.
I had to stop and think about it but you know years ago i went to school with a young man that had Lupus. I remember how he would swell and how his mother and father would take care of him at church. Back then i dont guess i gave it to much thought because as a teenager you really dont understand i guess. But i remember the day i saw his obituary in the local paper. He passed away at 48 years old. This was before all the modern advances in Medications. Now that i look back i remember how we just shrugged his sickness off and i really regret that. Odd how you will reflect on things like that in the past when we ourselves are faced with it. Thanks and Hugs to both of you.
I've heard people say the same thing-that Lupus is just some minor problem. The people who have died from Lupus, would beg to differ. I come across people like your friend often. I do my best to give them the facts without getting frustrated and pissed off. I mean, the information about Lupus is only a couple of clicks away, and yet so many people are terribly misinformed, or they just don't know anything about the disease at all.
Originally Posted by craftkeeper
The best we can do, is to be straightforward with them and lay out the facts in a way that they can best understand. The first thing I tell people is that although Lupus is not an automatic death sentence, people do die from it. It is not a minor disease by any stretch. Some people are really cool about it, and I've even had some people I've spoken to about it come back to me and say that they decided to do some reading, and that they now have a much better understanding of the subject. And, there are others who really don't want to be bothered with any of it.
That's life. But, out of all the people I talk to about Lupus, if only a few actually follow up and learn the facts, that's a few more who are now aware of those facts, and even might pass on what they know to somebody else. Increasing Lupus awareness is a very good thing in my book. Collectively, I think it's safe to say that none of us want's to have anybody feel sorry for us, but I think we would all appreciate it if more people simply understood us.
Last edited by rob; 04-05-2011 at 06:02 PM.
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I agree with what Lauren and Rob said - educate 'em! Print up something to hand them or send them a link.
I put links to both the Lupus Foundation and the Sjogren's Foundation on my facebook page.
Hopefully, someone will learn from them.
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Hi Rob and Marla. Yes your're both absolutly right. I will print out some info and the next time i'm faced with this i will have it handy. I really dont know anybody around me personally that has an inkling on anything about Lupus and i have to admit when i was first diagnosed, it took alot of research on my part to be able to understand it better.
I was wondering one thing that i did forget to ask in my original posts.
When first dx with Lupus were any of you given much information about it from your Doctors or did they just send you on your way? I really like my Rheumy, dont get me wrong. Even though he has done a few quirky things, for the most he's been very quick with the dx and started medicatiing me quickly. But on neither of the two visits that i have had has he volunteered any information except to give me a printout on Methotrexate and one for dealing with dry mouth and eyes. I understand that he is very busy but i was just wondering if anyone on here has a doctor that actually took the time to sit down and dicuss it with them. Just curious.
Funny because I get the opposite reaction with the people who know what's going on. When they ask why I think I have Lupus and explain they are always like but that's so bad, that disease, you don't want that. And I say no I don't *want* anything but the fact is I *have* something and I think Lupus fits the symptoms. I'm always hearing stories of a friend or relative who knows someone with it and is terribly sick and while I do have really bad times of being sick,generally I am not as sick as some people on here and more sick than others so I think I just have a milder case of it than some.
As long as this body works, I am going to enjoy life to the fullest for each second of every moment that I can.
craftkeeper, i think everyone can tell you of a relative who knows EVERYTHING about how you are not really sick.
my adopted aunty has lupus, and is a nurse. my mother had her talk to me, but MOTHER KNOWS BEST.
my rheumy, is very switched on about lupus. he admits that there is no literature written for doctors to hand to patients.
he recommended several books for me to read, but cannot find anything he can "legally hand to patients" silly isn't it.
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When I was first diagnosed, the Rheumo basically said good luck, and sent me on my way. But, my longtime G.P. who originally suspected SLE and referred me to the Rheumo was very helpful. His practice was just a small office with his wife who was an RN and who also doubled as the receptionist. On my next visit to them after the diagnosis, they handed me a sort of canvas looking gift bag and in it was a copy of The Lupus Book by Dr. Daniel Wallace, and a king sized bottle of heavy duty sun-block. I thought that was really a cool thing to do. Although he wasn't a Rheumotologist, he was very well read on the subject of autoimmune disorders, and really spent the time to explain to me the possible outcomes for me, and the lifestyle changes I would have to face. Too bad there aren't more Dr.'s out there like him.
Originally Posted by craftkeeper