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froggal
04-05-2009, 05:44 AM
I am new to almost all aspects of lupus . . . including the site. I am pretty nervous and a bit in denial of my diagnosis. I was recently diagnosed with SLE and dont really have a lot of support from my boyfriend. I thought this might help:unsure:

rob
04-05-2009, 06:11 AM
Hi froggal,

I'm Rob, and I was diagnosed with Systemic Lupus five years ago. The fact that you are experiencing some denial means one thing-you are normal. Denial is a very common, natural reaction that we all experience. For me, time, and knowledge of the disease has helped me to accept it, but I sometimes still catch myself pretending that I'm not sick, that it was all just a bad dream. Most days though, the denial is far behind me.

Even the most caring, and understanding people in our lives cannot grasp what it's like to live with Lupus. Some try to understand, some don't. For me, the only people who really understand, are others with Lupus. I live in a remote area, and there are no support groups here, so I turned to this site about a year ago. I honestly don't know how I got by without it. The friends I've made here, and the support I recieve from them have really helped me to cope with it all.

You'll find lots of support, understanding, some humor, and some great people here. Welcome to our group, and please make yourself at home.

Rob

sick n tired
04-05-2009, 07:08 AM
Hey Froggal,

Welcome to this forum... this is the perfect place for you to come for support. Perhaps your boyfriend just doesn't understand. Many times that can even be because you look well even though you are feeling awful or in pain. There is a site called butyoudontlooksick.com. The one think that I like about that site is it's name...I have heard that statement so many times and it is like they are not believing I feel awful...

I was diagnosed with SLE in October of 2007 and like, Rob, I still have times that I go through denial, too. I tell myself that I am lazy and that is why I am so tired.

I look forward to talking to you more and getting to know you as you are now part of our family...

mountaindreamer
04-05-2009, 08:56 AM
hi frogga,
i wrote a master's thesis your other thread, so i will just say welcome, we are glad you are here, and hopefully we can ease some of your nervousness.

Saysusie
04-05-2009, 09:03 AM
Hi Froggal;
Welcome to our family where our purpose is to support, comfort, educate, and to make sure that you know that you are not alone! I know how frightening it can be to be diagnosed with a chronic illness and we are here to help you cope with that diagnosis and to help you realize that you can still have a reasonably normal life with this disease. It is not the end of your life, but it will mean that you must take an entirely different path in order to maintain normalcy and to avoid exacerbation of the disease.
The people here are very kind and will always be here when you need someone to listen, answer your questions, or provide you with advice. I am glad that you are here with us. :yes:

Peace and Blessings
Namaste
Saysusie

froggal
04-06-2009, 12:23 AM
Thank you all so much for your warm welcoming words! I guess that I didnt really think that I would find a place that was so welcoming and understanding! That really truly excites me that I have actually found people that can relate to me!! Thank you so very, very, very much for giving me a place that I can feel like it is okay that I havent really accepted my diagnosis yet, and also a place where someone actually relates to me! I really truly am so glad that I found this place.