How did family react to your dx. - Lupus Message Board

Ceya · 12-17-2002, 07:31 AM

I am curious about the reaction of others when you told them of your dx. I have read that being dx is devistating. But I found that my family just blew it off. My husband dosen't want to discuss it. You know I feel that we need to except the fact and talk about the future when I get down worse. But no. I feel like the people around me ignore that I am sick at all. I also have noticed that no one will say the word lupus.
Can anyone relate and how do you handel this? I have been tring to just accept that I have this weired illness alone and I hide how bad I ache or hurt.
How do you handle this?
Help???

Ceya · 12-18-2002, 06:12 AM

It is great to hear from others. I am glad I am not alone. I was wondering if it was me or is this the reaction that everyone gets. Three boys is a hand full though. My 3 youngest are boys. The 2 oldest are girls. 15 and 17. they do seem to try and watch me and ask me if I am feeling ok. They do worry so I try not to let them worry.
thanks, I look forward to hearing from you.
Cecilia

Sunrise151 · 01-04-2003, 04:48 PM

Hi Cecilia
My sister has Lupus for about 2 years now. And when we were first told about this illness nobody really knew what it is and how to react. But we tried to find as many informations as we could. For this two years my parents have always been the one´s that were talking to my sister about food, heaalth and so on (just the things parents care about ) and I have always been the one my sister talked when anybody asked her about the red face or her cheeks. We also talked about many other things and I ask her as many questions as I can to show her that I care for her and that she is not alone. When any family meber found any news in the web, we give it to each other to read it.
I think the family should always try to be there for the ill person and they should also try to get as much information about the illness as possible to be able to support the person that suffers Lupus.

Ceya · 01-05-2003, 08:42 PM

Your sister is lucky to have you. My family depends on me to fill them in. i really do not understand this illness myself. Everyday seems to be something new.
My kids often seem to be the ones to ask me how I am feeling today, am I hurting. But I think they think I am keeping things from them. But I do not know how to explain and there really is not predictable future or pattern. I do try not to let them know just how bad I hurt. So they always think I am minimizing. My daughters, 15 and 17 do try and help alot. My 14 year lod son will help with the lifting. I appreciate your responses. Thank you I glad to know I am not alone.
By the way whether offically dx or not the pain and symtoms we share are the same. And even with the dx you really never feel like it is absolute.
Ceya

MAN WITH LUPUS · 01-06-2003, 11:54 PM

HI CEYA

ITS UP TO YOU WHAT YOU WANT TO FEEL ITS NOT YOU THAT HAS TO REACT IF PEOPLE OR LOVED ONES DON'T UNDERSTAND OR SHOW NO SUPPORT. O-WELL THAT DOESN'T CHANGE ANY THING YOU STILL HAVE LUPUS I CAN SAY IT AN IM COFORTABLE WITH. ITS THINKING I DON'T OR NEVER HAD THAT BRINGS ON STRESS AND THAT WE ALL DON'T NEED I MY SELF NOW KNOW THERE ARE OTHERS OUT THERE LIKE ME AND I CAN REACH OUT FOR SUPPORT WITH OUT BURDENING PEOPLE THAT WILL NEVER UNDERSTAND.

SAL

Quote:

Originally posted by Ceya:
I am curious about the reaction of others when you told them of your dx. I have read that being dx is devistating. But I found that my family just blew it off. My husband dosen't want to discuss it. You know I feel that we need to except the fact and talk about the future when I get down worse. But no. I feel like the people around me ignore that I am sick at all. I also have noticed that no one will say the word lupus.
Can anyone relate and how do you handel this? I have been tring to just accept that I have this weired illness alone and I hide how bad I ache or hurt.
How do you handle this?
Help???