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Old 12-17-2002, 06:31 AM   #1
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Ceya HB User
Unhappy How did family react to your dx.

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???

 
Old 12-18-2002, 05:12 AM   #2
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Wink

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

 
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Old 01-04-2003, 03:48 PM   #3
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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 oneīs 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.

 
Old 01-05-2003, 07:42 PM   #4
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Ceya HB User
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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

 
Old 01-06-2003, 10:54 PM   #5
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MAN WITH LUPUS HB User
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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???
__________________
PEREZ

 
Old 01-07-2003, 06:20 PM   #6
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shasha HB User
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hey ceya,
something you said really made me think. you said whether you are dx or not the pain is the same and you still have doubts sometimes ( I think thats what you said, i just read it, but my memory has been awful) as I get closer to my diag. even with the rash, all the symptoms, and high a and a. i still hold out for hope, its not true, even though i know it is.
i think our mind does that to help us except it slowly.i know it wont make it any easier when he writes it down.
have a good day
sha

 
Old 01-13-2003, 04:28 PM   #7
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Ceya HB User
Wink

Thanks all. I am getting better at excepting my illness even though I really do not understand what to expect. But I have been using the message boards when I can. I hope you will get the dx. so that your treatment can start and it is a relief to find out what is wrong with you and have a name for it. Better than viral or stress. Which is what I heard for a few years, not knowing there was anything out there to persue.
thanks all,
Ceya

 
Old 01-17-2003, 11:57 PM   #8
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Dear Ceya, I know it's been a month since you posted, but wanted to respond anyway. In the beginning(almost 30 years ago) my husband was very annoyed, but it came from fear. He didn't want to know anything about it and did not want it to affect our lives. I pushed myself to do everything I was "supposed" to do. It seems like every 2-3 years I would have some type of flare that really caused financial problems. I don't know how many times I've told him to just leave. He has stuck by me all these years and the last 3-4 years he can tell when something is going wrong before I do. He has been an angel and understands when I can't get out of bed. I always felt alone too. They're there, they just can't deal with it yet. My daughter was very resentful of my "naps" and the fact that I couldn't braid her hair with these hands. Then, she started having symptoms and began to understand more.
Just give them time and let things said in anger roll off you back. My immediate family are very supportive now and I just don't worry what anyone else thinks. I don't have time. Good luck to you and remember you're not really alone. Sandy B

 
Old 03-27-2003, 11:39 AM   #9
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Deb2003 HB User
Question

Hi,
I'm a graduate student studying rehabilitation and I am doing a research paper on Lupus. I've read many articles and books, but I was hoping that someone would be willing to answer some questions about living with lupus. Getting a personal perspective would be invaluable and greatly apprectiated!! All responses would be confidential. Thanks for the help and all of responses

Here are some of my questions:

1. What is your understanding of this diagnosis for example, your prognosis, complications, symptoms and how long did it take to diagnose?

2. Why do you think it is so difficult to diagnose, and which type of Lupus do you have?

3. What kind of changes did you have to make in your life regarding work, family, friends and social activities?

4. Take me through a good day? Take me through a bad day? What kind of challenges do you face?

5. Are there doís and doníts you have found in living with Lupus? (diet, vitamins, exercise, medications, fatigue, sleep etc.)

6. Has having Lupus impacted you quality of your life personally? If so, how? Has having Lupus impacted your professional or work life? If so, how?

7. Do you use support systems to help with everyday functioning? If so, who and how helpful?

8. Are there life stressors associated with the disease?

9. Did your family have any reaction with your being diagnosed with Lupus? Please explain.

10. Have you ever felt that you were treated differently being diagnosed with Lupus? Could you explain the events surrounding those feelings.

11. Are your taking any medicine or treatment? If so what? Has it been helpful? Are there any new experimental approaches?

12. Have you been told about your long-term prognosis?

13. Is there any history of Lupus in your family?

14. Do you have any counseling recommendations for future counselors who will be working with people with Lupus?

 
Old 04-05-2003, 02:50 PM   #10
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rayofsunshine HB User
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hi,i am lucky to have a really supportive family. my father has sle and was the first to be dx, i was only young at the time, and i didnt understand what he had. 2 years on , i kept falling ill{age13} with mysterious viruses. then after a really hot summer, i got my first rash, which was devasting. i had a lupus test, but it came up negative. didnt get the right dx until the age of 25. but even without a dx, i accepted i had lupus. my grandmother was dx next. so really we all rally round, and help eachother. my poor mother worries a lot about me, even worse since i moved 120 miles away from her.i have a younger sister whos 18 is showing signs, rash and fatigue, migraines, but everytime i bring up the question of getting teste, she freezes on me. she is likely to be scared, i dont want to pressurise her, as she is fragile emotionally, after many personal problems. but i hope to eventually persuade her.

 
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