What happens to our families??

[Rene]

I was just wondering what happens to our families?Where do they go?Do they even care?;) I just don't understand families. You know Momma's+Daddy's, Sisters and bothers. Before I got sick I use to take my son to see them often and before I had my son I use to go and see them often. It was a long drive but I thought it was important. I use to call them often even though it was a long distance call. It was family so it was important. You know that my family have just forgotten me,literally. Really,they just don't call,write,send a post card or anything.They don't care! I use to get really hurt by it,but now I'm finally ok with it. But I find it just amazing at how people are. How does one do that to there family when they are chronically ill.Some of them have bad health problems and I tired to call but my sister would always say I'm busy, can I call you back and she never would. There for a while she started calling asking me to pay her bills online for her/with her money. I told her sure,but sometimes my hands are bad and I can't use the computer and that I didn't want her payments to be late. A couple of times I couldn't do it and she just doesn't call me anymore. But she didn't call before then either. When ever I try to call my mother she lets the answering machine pick up but she doesn't call me back. I just don't call any of them any more. Why bother. Does this sound like any of you, Have you families abanded you. Sad but true. THank GOD I have a great husband and son.!!!!!!! Just thought I would vent alittle!!THANKS!!!:)

[saints.mama]

hi rene, were you by any chance the "fixer upper" in your family? i can't comment on yours but i know that in my own family, i was always the one who advised, took care of my parents, sorted out the problems of my 4 adult kids (2 of whom have downs syndrome), fostered special needs kids (5) and babysat grandchildren. anyone who needed anything, i was there. then i got ill...... suddenly, my brother and his family don't talk to me anymore, my older kids rarely visit so i don't see much of my grandchildren nowadays, my mum died last august after a VERY long battle with heart disease, amputations etc and that leaves my dad...... he's a very needy man due to his own upbringing and can't accept that i'm ill, bless him. the extended family don't talk to him either so it falls back to me to emotionally support him. my older kids visit him more than they do me and they have to drive right past my door to get there!!! but they rarely stop. i have always been the "fixer" in my family and as soon as i couldn't fix things for them anymore, i was redundant!!??? it took me a long time to adjust to their attitudes (as the moderators know!?) but if lupus does one thing for us, it weeds out those who are only using us cause we've always sorted their troubles for them and what we're left with is the genuine ones who are there for the long haul. my husband and i had some VERY rocky times but he is literally my rock now. we had to place my downs daughter in residential care due to my illness (she's 22 ) so, after all that waffling, i'm left with my lovely hubby, my dad and my 18yr old downs son who's the light of my life, i've gone from a huge extended family and loads of friends to 3 people but at least i know they're genuine.
to look at it another way, maybe your family find it hard to accept that you're ill and don't know what to expect of you now? have you asked them to LISTEN to how your illness affects you and what you'd like from them? they maybe just don't know how to be around you. tell them what you need and how you feel, then they're response will be up to them but you will have made your feelings known to them. and of course, you've got any number of understanding friends on here who truly know what you feel like! all the best rene, take care, sandi

[gingertoni]

I think it is because they forget you/we are ill, Lupus can be an invisible condition and most of us suffer in silence, you feel ill most of the time you don't want to moan about feeling ill the rest of the time when you meet up or chat to friends and families it is to try and forget and take your mind off it, talking about it would not help. Families very rarely see us at our worst, so cannot really appreciate how it is, and how bad it can be and how often that is. I think most people think it is like a cold and a few days in bed and it will all go away.
My other thought is that they don't want to think of us with all that pain so treat us how they would like us to be, the sister they always relyed on etc.

My mother has Lupus but she does the same which always amazes me. I don't know what the answer is.

[helloos]

You know what the first thought that came to mind was after reading your post?

Mail a card to each of them saying "why have you forgotten me?"

I say this cause I saw a card like this the other day and thought, wow, what a card.

Just a thought.

My family is there for me, but just doesn't bring up anything to do about Lupus. It is sort of ignored. My mother seems to get every ailment I have so I don't tell her anything anymore.

It is a hard situation. But YOU HAVE YOUR FAMILY HERE AND WE WON'T FORGET YOU !

[Caljen]

You can choose your friends but not your family unfortunately.

Like most of the people here I don't complain anymore if I'm feeling off colour I just tend to get on with it and accept it as part of me now. However, I do agree with you all, it would be nice if sometimes people would SINCERELY ask how you are really doing. I have a great friend who I couldn't bear to be without and although she doesn't know too much about Lupus has read up on certain articles about it and I feel I can talk to her about anything at all. My immediate family try their best to help but don't know enough about the illness to discuss it. My Sister and Brother, like yours, don't even mention it so I don't offer any information. Like you also I always make sure I ask after their health and offer any assistance if I am able. Perhaps there is a lesson to be learned here We should stand up and say NO, I'm So sorry I can't help you today IM NOT WELL!!