Family

[jhmom]

Hi everyone I need some advise. Over the past couple of years I have slowly watched my friends pull away from me one by one. I couldn't attend all of the birthday parties so they stopped inviting us, sometimes too tired to drive to a friends house to eat dinner, etc so they stopped inviting us. Now I am experieinceing the same thing with both sides of my hubby's family.

Over the memorial day weekend we went to a family gathering, cooked out and was there most of the day, we had a great time and I am glad I felt well enough to go!

Well on Father's day they invited us to go eat with them and I didn't feel like going and my hubby had a lot to do so we didn't go.

So now for the 4th my in-laws invited us to come to their house which is 2 1/2 hrs away, I knew making a trip like that would kill my lower back and would wear me out so I didn't really feel like going. I wanted to enjoy our long weekend here at home. I think it made them mad.

THen we found out about a family gathering for the 4th that we knew nothing about and had not been invited to That really hurt our feelings and I can't help but feel like it's all because of me. Everyone in our family has something going on whether it's going through a divorce, greiving, etc that it just seems they do not understand what I go through on a daily basis.

I was recently dx with Lupus and called my hubby's stepmom to tell her they finally figured things out for me and when I told her, her attitude was like "so what"! I am not close to her and have never complained about the way I feel or called her about every little doctors visit, so why in the world would she treat me like this?

I am sorry this is so long... just needed to get it all out I guess :( . Thanks for listening :flowers:

[jude mack]

;) Hi jhmom I am sorry you are in this position, I know it hurts, and you feel it is all your fault. But I wouldn't sweat it, if they can't accept you the way you are,it thier problem, not yours.
They are the ones missing out on your company. Have you tried to educate them a bit on Lupus, I would try that. If you already have and they still aren't responding in a positive way, they aren't worth worrying about. You have to worry about yourself and stressing doesn't help you.
Maybe you could invite them to your home, when your feeling well and see how many turn out. This would show you are not staying away for no reason and may give them something to think about. Or maybe it is just going to take them more time than you expected for them to adjust to your problems. Hope this helps a bit. I wish you luck. Jude :hugbetter:

[hurley]

Hi Stacie

I'm sorry to hear that your husband's family doesn't understand how devastating this disease can be. A 2 1/2 hour drive one way is a LONG drive.

It is difficult to put on your happy face for social events when you feel so ill. It is also very draining and I'm with you - most of the time I prefer to spend my days off with my daughter spending time with her and doing things around the house when I am up to it. I have a neighbor accross the street who has become a dear friend (her husband died 2 years ago) and we talk daily. When I'm up to fixing a decent dinner or bar-b-que I usually inviter her over. I don't have to look spectacular. She also invites me and my daughter (sometimes my dogs get an invite, too :lol: ) over for visits when she feels up to it. That's about the extent of my social life. Just too darn hard sometimes.

It does take a great deal of effort for many of us to socialize the way we used to do. So, I don't really have any advice. What can you say about people who don't understand and don't care to make the effort to do so. Maybe they could make an effort to make the long drive to your house more often.

I don't usually plan anything anymore because I'm usually sorry I did. I have learned to do things spur of the moment when I am feeling up to it.

You're a lovely person and I'm sorry that you have to go thru this on top of all that goes with your diagnosis.

Hugs and Love.

:love:

Julie

[flowergarden]

Stacie, I'm so sorry. People can be so cruel. Yesterday I emailed a close relative about the relatively poor results of my neuropsych testing and the fact that I may have to give up driving. The reply I got was that the news wasn't good, but at least I have insurance. That's all that was said.

They just don't understand, do they?

Since I'm becoming limited in what I can do and how far I can go, I've about decided to invite people to my area more, but entertain them at a local park. I don't have to get my house ready that way.

Do you think it would help your relationships if you asked the relatives and friends to take lots of pictures or videos for you? Do you have a digital camera so you could send photos to them? That's about all I can think of.

Please let us know what ideas you come up with. I'd be very interested myself. :flowers: :flowers:

[JoD]

Originally posted by jhmom@Jul 3 2005, 12:12 AM
it just seems they do not understand what I go through on a daily basis.


http://www.butyoudontlooksick.com/spoons.htm

Maybe you should tell them about the Spoon theory.
Joanne

[fly-by]

Hey Stacey :overhere:

It sure takes lots of patience from both sides when dealing with these fickle autoimmune diseases, doesn't it? :shrug: Hopefully, once your meds begin to kick in things will level out for you and you can join back in...not that that excuses your family or friends from their lack of acceptance toward you!!! Like someone else mentioned maybe you could educate some that are closest to you who really do care about what you are going through....and they could in turn inform others of your circumstances. After a line of communication is opened maybe everyone will come around and be more accepting.
Rejection hurts from either side...but hopefully with a little understanding things will settle down. Good luck
:luck: to you and your family. Hang in there.

Take care

[Lily]

((((((((((((((((Stacey)))))))))))

I have no words of wisdom, I have found that slowly family have come around (well some of them ;) ) and luckily I have two long time friends who have been my rock. They listened and they wanted to understand and so I explained as best I could. They realised over time that what I was dealing with was very real, whether I looked ok or not, they knew my limitations and we worked around it.

It does take time and communication on both sides and I lost some people along the way, the ones that really mattered though stuck around, although there were some cooling off periods with some of them :P I did keep the lines of communication open.

I'm sorry so many of us go through this, its one of the cruelest aspects of a disease where you dont always look as obviously ill as you are :wacko:

For the really obstinate ones I have a perfectly good iron fist :P you are welcome to borrow it at any given moment :D :hugbetter:

love
Lily

[Deborah Rumbles]

Hi',I have educated my husband and my 2 sons to the point of exhaustion but this has helped me as they, especially my husband can inform our family of how my SLE effects me,and how I may look ok, but really underneath my skin I am not,so he deals with people who should know better especially family and close friends although they have been told loads of times by me,still asks crazy questions...Im fed up being not invited to things because sometimes I haven't been able to turn up previously,also fed up of having to explain how I feel bad, but look okay. :blink:

[mamascan1]

Hi Stacey,

Sorry to hear you have to go through this. As many of the others have said, it seems the ones that really care-take the time to understand and do what they can to help. I have lost all contact with my parents and all of my siblings and even my own daughter. It is very difficult! I personally have learned to just go through the greiving process for each person I've lost, whether this was due to my illness, an arguement or just plain family bull&*(). It isn't easy, and yes it hurts alot. But for those who don't wish to "be bothered with us", I say it is their loss too!

May you find some peace dear one. I'll say a prayer for.

Hugs,

Michelle :flowers:

[rwb200]

I can understand what you are saying. Many of our friends have stopped asking us over or out as well. Just as well I guess since the vaste magority of the functions are outside and there is no way that My Wife could do this.

I just figure that they were not such good friends after all.
If they were then they would be a little more understanding.

As for family well it seems that her family has never got it and never will. Her Mom was great when my wife was in the Hospital on life support and when she first came home and could not walk and had to learn to do it again.

But since then it is almost like if she thinks well she is walking again so everything is fine.
Her dad acts as if he is oblivious to all of it. I do not understand them and never will and I know that it hurts my wife alot.
My Family is great about it. There first question is always how is she doing?
Do you think you may be able to do this ? If not it is OK we understand.
If they plan something outside and we tell them it wont work the next year it is inside so we have a better chance of being able to do it.

Some people will never understand and they do not want to understand.
It is hard but we just try to concentrate on and remember those who are good about it and not worry about the others. If they don't want us then we don't want them either.

[LWL2002]

:shrug: ....Hi jhmom.......Im lost for words but how bout a BIG hug!(((((((((((((hug)))))))))))))))))))))) Laura

[jhmom]

Thank you everyone! :flowers: It seems it was all a big misunderstanding with one side of the family, one family member thought another one told us about the cookout, anyway.... we went and had a great time. That side of hubby's family has always been very understanding or seem to be anyway. I guess I took it WAY too personal and had to vent!

Thank you again, I really appreciate your kind words and support :love: