View Full Version : New..and letting others know about it?

06-09-2007, 10:31 PM
I'm 22, healthy college student (almost through...student teaching next semester!) and just got all my puzzle pieces put into place (well, I would like second opinions, etc)
My doctor just called me on Tuesday of this last week to inform me of my bloodwork. I had been through my personal doctor, an internist (when they thought I might need bone marrow drawn), and finally, a rheumatologist. It was over the phone, and I had so many questions. I'll save those for around the forum. I'm pretty sure I just typed a novel of questions, but decided to wait and spread them around! Lol.
I don't go back and see my rheumatologist for 2 months. I'm feeling fine except with some mild hip pain that comes and goes. As of right now I'm just on Plaquenil.
My question, though...after the lovely introduction:
How do I let others know? I want to raise awareness and share. I don't want to feel like I'm hiding things. Of course my family knows, some friends, and my fiance. Other than that, I don't know how to do this without getting the "sympathy hug". I DON'T want any sympathy. I don't want to have things handed to me. I don't want others to look at me differently or think I'm trying to bring attention to myself. I want people to see the disease and know about it, and how to help. I don't want them to have pity on me or a label. My family treats me like a baby (which, I live with mom and dad until the end of the summer semester), and I don't want others to do the same. The only person who treats me like a normal human being is my fiance.
Can anyone relate to this feeling? I don't want pity. I don't want special treatment. It could be I'm just really emotional right now...it's really late!
Can anyone tell me how to introduce it without getting all this negative stuff?
Thanks, and thank you for reading a novel. Also, thank you for putting up with poor grammar or typing. I tend to do that when I can...lol.

06-10-2007, 09:37 AM
Letting people know is the right thing to do. Explaining Lupus well to someone is a hard thing to do though. A lot of people don't get it. But all you can do really is read up on it and when you find someone to talk to, talk with them about it. If you have just now been diagnosed it is important for you to learn as much as you can. I read your other post about teaching and your family is right to be concerned with your work load. An attack is not just brought on by stress. Doing too much in a day can do it as well. You have to be careful when you are newly diagnosed because you are not sure what brings an attack on. It is really different for everyone. My worst enemy is heat and sun light, however I had to learn that the hard way. I went to the lake for an hour and spent a week in the hospital.

Also I found it was important to explain Lupus to my family more than anyone else. Because it's hard when you wake up and you feel like you want to die but you like your fine, people to start doubt the disease.

Sorry for my novel lol...but I really hope that you can go to school and work. And welcome. [/i]

06-10-2007, 10:10 PM
Hey thanks for the reply. I am all for letting people know. I kind of tried today with a couple of girls at work. I'm a waitress...and it's really hard on my body...always has been!
But I didn't know how to introduce it to others. I don't want to be like "Hey, I have Lupus guys" out of nowhere, ya know? I do want to get it out and tell people in a non-"look at me feel sorry for me" type of way.

Thanks for the wonderful support!

06-11-2007, 06:19 AM
why don't you wear a conversation piece, like a purple ribbon or something like that. that way someone will ask about it and you can explain it. Cuz you will say I have lupus and most always the other person says What's that? It's a good opener and since you didn't really start the conversation the sympathy factor won't be too high.

06-11-2007, 08:23 AM
That's a great idea. Thanks!

06-14-2007, 05:28 PM
Hi Karibear!

Welcome to the Forum! :D I'm glad that you found us! :D

Please just know that anytime you need advice, support, information or just to vent or chat, we're all here for you!

Keep well! :)