Dealing with family members before and after dx...

[tandarat]

I'm am currently trying to get a dx on whatever I have. The one thing everyone agrees on (except "Dr. Jerk", my current rheumatologist, who I get to fire two weeks from today :D ) is that I have some kind of autoimmune disorder. The labs indicate this, my symptoms indicate this, but no one can figure out quite what it is. Grrrr.

In any case, how do I discuss this with my family members? My husband COMPLETELY doesn't understand, and is very insensitive about it all right now. He's one of those guys who likes to be taken care of, and I just can't do it right now. On Saturday he had a good one, though not his best, by far. I was moving as fast as I could to clean the kitchen (to his credit he was cleaning the living room), and out of the blue he says, "Do you realize that if you have rheumatoid arthritis, you are going to be a cripple?" EXCUSE ME? :angry: His mom isn't much better...everytime I talk to her, she wants to know when I'm going to find a job (I've been off since the birth of our daughter, since she was a preemie and my office closed a few months after she was born, anyway). I have a hard time keeping up with my daughter. I'm terrified I couldn't handle a job right now. I used to work 12-18 hour days on a regular basis, and it felt NOTHING like this.

My mom is terrified...she sees the worst, and with good reason. My dad died at 53 of a heart attack, and my brother died at 42 of an arrhythmia. I'm really the only family she has left. I tell her everything is fine, that treatment for these disorders has come a long way, and I will be fine once we figure it out and get on an appropriate treatment plan. I can't tell her how nervous I am, since she will end up getting even more scared. I can't tell my husband, since he OBVIOUSLY doesn't get it, and I won't even try to discuss it with my mother-in-law.

I just need some ideas so my mom won't go into panic mode, and my husband will be a little less of an idiot when the subject comes up. I'm under enough stress as it is, ya know? :wacko:

Michelle

[LWL2002]

:wave: ....Hi Michelle..You do sound a little stressed. It is hard for one to understand what lupus is all about unless they them selves have it. I really dont know what else to say, except I hope your not so stressed right now. Oh, by the way, I like that Dr.s name! Dr. Jerk! lol....take care Michelle and I hope you fell better soon and that you can get some better understanding from your husband!.....Join us in chat when you can!..take care...Laura

[malteser]

Hi Michelle,

I can't pretend to completely understand you're situation as I'm a single person with only myself to think about, so the stress of family life hasn't been an issue for me yet. However, I do know what it's like trying to tell the people who don't understand and often don't show that they care and the people you don't want to tell too much too, as it would panic them and not help you at all!!.

I'm lucky that I have my two brothers, I haven't told them too much (they are the types that would panic!), but if I need a good cry they are there. Even better I have found help in an extremely close friend away from my family. It's really hard to trust that someone will understand no matter how you close you are to them. But if you find somebody away from your everyday life to talk to, somebody who may not have all the answers but will listen,it would make an incredible difference to you. You may find this person in the shape of a support group or something?
If there isn't one close to you, then try a friend or keep posting this site until you've exhausted all of your frustrations!!!!.

I hope this has helped a little. keep posting x x x x x x xx :hugbetter:

[dobermom]

Hi Michelle,
I wish I had some good advice for you on how to get your husband to understand or to ease your mom's worries but I don't. I just want you to know that I sympathize with you. I love my husband dearly but he doesn't understand or have any compassion for my health either. I have been seeing a rheumatologist who thinks I have SLE but I haven't had the diagnosis made official yet. I look healthy but I feel horrible all of the time. My husband never gets sick or hurt and has always had the attitude of "suck it up and deal with it" if you are hurt or ill. When I'm in pain or feeling especially tired (which is all of the time lately), he tells me to "stop whining". It's to the point that I can't tell him how I feel and I try to cover up when I'm feeling bad so I don't have to hear the stop whining line. I also feel like I can't talk to him at all about what my doctor says because he'll tune me out and he thinks I'm a hypochondriac. It's very difficult to deal with, as I'm sure you know. I have 3 kids and trying to keep up with housework, kids, etc is getting too hard. Like you, I don't work right now. I used to work full-time but with my current health, I don't know how I could deal with going back if I had to. I feel very alone and isolated although coming to this site and reading posts, such as yours, makes me feel less alone and a little more comforted to know that I truly am not alone. Hang in there and hopefully your husband will come around and be more sympathetic and understanding.

Hugs,
dobermom

[bklynmom]

Hi Michelle,

Although I do not have SLE I do know what you are going through. My husband never understands when I feel ill with my asthma or there are some days when I have no energy. Especially after spending the entire week juggling my son's appointments. (He was DX with a severe form of SLE two years ago.) Sometimes as women we want to take care of ourselves but we feel guilty that we have to fit this mold of the perfect mom/wife. I used to get stressed out about the same things as you when my kids were young. My mother in law would make me feel gulty that I would stay home with the kids. :angry:
It took me years to realize that was my choice as a mom to devote my time to raising my children. I suffered so much because I was still expected to run around and do everything even when I was ill. I learned with my last child that I had to start treating my body first.
Men tend not to be to empathetic when you complain. I've been married 27 years and from time to time my husband reacts the same way as your does. They tend to detach themselves for some reason. :huh:
You need to care of yourself first!!! :nurse:
You will not be able to function otherwise. Listen to your body and let people know that you don't care to rationalize your choices to anyone.
Take your time when you clean. If he wants it done quicker. step back and let him do it. My husband now does the dishes, cooks, cleans and does grocery shopping on his own. :coffee:
Let him know how you really feel before it really starts to affect you STRESS=FLARE UPS :shrug:

Hope everything turns out well.

[rwb200]

Hello - I can only tell you how my wife and I handled it when we found out she had Lupus.
First we were very direct and straight up with people telling them what she had.
Next we started to educate ourself so we could better understand it.
There is some very old information out there that sounds very grim but alot of new information that sheds a new light on it.
As we became more informed ourself we incouraged others in the family to become more informed as well. This included speaking to others who had it for a long time and recomending books or even making copies and sending it to them.

I can tell you that some people have never got it and never will. We can incourage them to become educated but not force them to. We also can not give them a since of understanding that just is not there to start with.

[macfamily53]

Dear Michele

It is true you do need to worry about your health and not worry about what your husband thinks. If that was as easy as that right. My husband does not tell me to quit wining but he does not say anything basically. People tell me that is because he is probably scared so he thinks if he does not talk about it maybe I will gett all better or something. Maybe in some ways that is why your husband says the thing he does. I know you are hurting though and so does everyone hear in this group because we all suffer with some or a lot of pain in one way or another. It is really hard for someone who has not expierenced some kind of real pain in there life to understand.I used to have a friend that would say, well none of us no when we are going to die. Like that was supposed to make me feel better or she was trying to shut me up. So i have learned not to even bother. I think giving friends and family members imformation can be a good thing. They do seem to understand it a little better.It has seemed to scare my mother in law. I probably should not have given to her. I really think a support group if it is at all possible for you or keep going on this website it is a great help. Good Luck with everything. :love: :love:
Tammy
P.S.I hope i helped a little ;)

[sparks]

:wave: Hi lwl2002
When my wife was dx with lupus sle about 8 years ago i dident understand,
so i looked it up on the net and found this site and read about the probelems that
came with this illnes it made me understand and the tears flowed, we now look at
the message boards together , this illness causes stress and deprestion to both
the sufferer and the partner, so send your husband of in the direction of the message boards and he will find help just like i did from a lot of wonderfull people
:love:

[belladonna]

My son said to me, (not that long ago), that I blame everything on Lupus, then, he called me a ?pity whore?? :o (He?s 14 and still gives hugs, but this day, I guess he just lost it.) It really hurt, but I was having a good day, so I was able to shrug , laugh and say, ?ya from where you sit it must looks like that.? :shrug: Then he cried and said that he was sorry and we hugged, got to talking, and I explained the ?spoon theory? to him. http://www.butyoudontlooksick.com/spoons.htm
(People seem to understand better if I tell them about the spoon theory.) After that I made a house rule... No one is allowed to ask me how I am cause I?m never going to be the way I was before Lupus. So now it?s like, ?mom, you got extra spoons today?? Or Mom, you low on spoons??? Need some help?? It?s much better like that. :)

One day, my mom in law told me that her friend had a neighbour with Lupus, and she looked just fine and seemed to manage ok. I said that I?m betting her friend never saw the woman on her ?flare? days? I think maybe she got that. Nobody sees me when I have a flare except my husband and kids, but she came over one day when I was struggling and in tears? :cry: I guess she gets the picture now. :rolleyes:
Then there is always ?my life is going down the toilet and I?m sad about that?, or, ?I feel like I?m 95? ? Well, no one really likes to hear all that... but like I said, most people can understand the spoon theory. Hubby says it?s his job to make sure I have a spoon or two left over for him at the end of the day. Hubby is sweet. :love: He says the spoon theory helped him a lot. It's a hard disease to explain and he comes with me to all my appointments so he can ask questions too. ;)