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Posted 10/13/2011 8:04 AM (GMT 0)
Hello everyone I am a 20 year young female. I am new with this whole lupus thing, I try and explain it to people and some don't understand. I don't like complaining about how I feel so I smile and pretend I'm fine though I'm really hurting. My parents tend to freak out if they see any subtle change in me. Any advice on how to go about talking to people about the disease? And I'd like to hear some of your stories about your diagnosis, how your life has changed and how you cope with the pain physically and emotionally.
I'd really appreciate it, Thank You(:
Posted 10/13/2011 3:51 PM (GMT 0)
As for how our lives can change -- lol. Just start reading anywhere in this forum and you'll find lots of stories as we all explore our new lives and limitations with Lupus!

Best wishes -
Posted 10/13/2011 9:53 PM (GMT 0)
Check out www.lupus.org and see if there is a local support group in your area.  The best way to get information is by talking face to face with others who have already been down the same road.  Our group has several young women who have lupus and needed help figuring out their "new normal."

Bill

Posted 10/13/2011 10:26 PM (GMT 0)
I have my good days and I have my bad days. I'm new to lupus myself and I'm learning my limits too.
Posted 10/14/2011 4:55 AM (GMT 0)
Thank you so much. That essay is great!!! I will definitely be sharing that. And I will begin to look for support groups around here :)
Posted 10/15/2011 7:57 AM (GMT 0)
I know how you feel. I'm 21 and was diagnosed 2 years ago. The spoon theory is a great way to explain to your loved ones HOW HARD it is living with Lupus. At first I must say I was in denial. My whole life changed in a matter of seconds. Though I was quite sick before but when they put a name on it, it's just like a bomb fell on you. I had just graduated then. Like I want so much out of life but can't do that now. Well I can but on a slower tempo. It's hard yes. I live day by day. Some harder than others. But I'm glad I'm still alive. It takes awhile to get used to it. I say this now because I'm not flaring. Hehe. But just take it easy. Know your body. Know your limit is what I tell others. Don't overdo yourself.
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