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SweetNovember
05-30-2012, 04:45 PM
Hi all!

I would love some insight...
Some people just don't understand hidden illnesses. Most of my friends and family try to understand and are quite supportive in helping me deal with my recently diagnosed Lupus. It is something I have lived with for years without a diagnosis, but those close to me have known my symptoms all this time and are wonderfully helpful.
My problem is with Husband. He ought to understand (his mother has Lupus) but alas, he chooses not to.
Let me say that I have become a master of hiding my symptoms from others. I wear makeup to cover the butterfly rash. I don't show that I am in pain. I don't complain about my symptoms. I pretend that I am just like everyone else much to my regret sometimes.
I have recently started sharing more with Husband (married 4 years) and he usually tells me I am "being a diva" or "its not that bad".

Well you know what? It IS that bad!

The other night, he wanted to do something and I told him I didn't want to-that I was too achy to do anything. He replied in a sarcastic tone "That's weird, you weren't sore a few minutes ago and now that I want to do something all of a sudden you're too achy." I told that I was achy before. He said that I hadn't mentioned it before.
I had reached my breaking point. I replied in a voice louder than necessary "I hurt ALL the time, every minute of every day! If I complained every time I was in pain, you wouldn't be with me right now!" He said nothing more on the subject.

Okay, so now that I'm reviewing my post I just sound whiny. I'm sorry, guys. I'm not normally like this. It's just something that's been bothering me for quite some time now and I just had to vent. Bottom line is that he does not understand and, I believe, chooses not to understand.
Have any of you been through this? That's probably a silly question....
How did you deal with it?

Anyway, thanks for enduring my rant. <<gentle hugs>>
<3

Hunniebun
05-30-2012, 05:51 PM
Believe me when I say you are NOT whiny. I hide my pain, my fatigue, my rashes as best I can too and try to act like everyone else, and then that makes them think that its not as bad as I say it is. I do it so people will like me and want to my friend or not get annoyed with me, etc, because all I am trying to do is make the best of my life and not let Lupus ruin me.

I have been through this multiple times and the worst time was when I left my fiancee, we were together for 5 years and he had recently proposed (I got rid of him in 2009) but he had changed since I was diagnosed. He chose not to understand and he would pressure me for sex and get very angry (even hold grudges) at me when I wasn't able to give it to him.
He was not worth it, he showed his true colours when I was diagnosed, so it saved me from walking into a bad marriage.

I am not at all saying that your husband is the same way, but maybe he is in denial over your diagnosis?

I choose not to deal with people who are assholes to me or think they know how I feel and what is bad and isn't bad. I get rid of people who are no good for me and keep the ones that are.

SweetNovember
05-30-2012, 08:13 PM
He is EXACTLY that way! I feel bad enough when I can't give him what he wants, but when he gets so angry and begrudging, it makes it that much worse! It's like I can't get it through to him that it's not that I don't want to, I just can't!

magistramarla
05-30-2012, 09:06 PM
Sweetie,
There have been lots of conversations here about this very subject - I'm sure that you will hear from others who have dealt with the same thing.
There is a link to a great post called The Spoon Theory - http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/ I don't know if you can get your husband to read it, but it might help.
You said that his mother has Lupus. Are you on good terms with her? Perhaps you could enlist her help in dealing with her son. I have an adult son, and if his fiancee told me that he was acting like this, I would give him an earful!
I don't get this attitude from my husband, but I've gotten it from medical professionals. I've been told the "I might be a hypochondriac" and that I would be completely healthy and pain-free if I would just lose 20 pounds. I know how it feels to be dismissed, and it makes me very angry.
Hugs,
Marla

rob
05-31-2012, 03:45 AM
Hi SweetNovember,

First of all, you are not being whiny. You have a legitimate problem, and no apology is necessary. Don't worry, this is a safe place to vent your frustrations. Nobody is going to judge you here.

Back when I was first diagnosed, I started to think I was a Proctologist because of all the a-hole's I had to deal with every day. Like Hunniebun, my fiancee and I didn't last after the SLE diagnosis. I've since moved on from that.

I had to finally just cut the people who could not accept my diagnosis and all the new limitations that came with it, out of my life completely. I had to "clean house", so to speak. I hate to be this way, but I had to develop an attitude of take me as I am, or get lost.

Of course, since this is your spouse, you can't just say get lost. What Marla suggested is exactly what I was going to suggest. The "butyoudontlooksick" website and the spoon theory has helped many friends and family to better understand what we deal with with Lupus. And you could have a real friend and ally with your mother-in-law. Maybe you could get her to talk to your husband, and help him to understand and accept the situation better.

I hope you can get the problem solved. Lupus feeds on stress, you don't need that.

Welcome to our group,

Rob

Nonna
05-31-2012, 03:56 AM
Rob said it best.

My ex is an ex because he is what he is.

My daughter cares, and gives me the you will live longer if you take care of yourself speech a lot
Do what is best for you

Toni

debbie-b
05-31-2012, 04:17 AM
SweetNovember,

You are not whiny. I can't imagine how I would feel if my husband wouldn't understand or chose not to.
My husband is the ONLY one who really understands, because he is around me all the time.
But you know, it could be that your husband is either in denial or that he is scared, because he doesn't know what to expect.
When it comes to sex, men especially young men, don't think with the brain, but with ...( well you know).
You can only hope, that he will get it, with time.

Debbie

SweetNovember
05-31-2012, 04:22 AM
Thank you all for your words of support! I have been on butyoudontlooksick but I'm not sure if I could convince him to read an article. I am on great terms with his mother (I like her more than I like him sometimes -lol) so I may have to enlist her help in getting through to him.

debbie-b
05-31-2012, 04:41 AM
Thank you all for your words of support! I have been on butyoudontlooksick but I'm not sure if I could convince him to read an article. I am on great terms with his mother (I like her more than I like him sometimes -lol) so I may have to enlist her help in getting through to him.

That is the best way for you. I tell you, if he was my son, I would " beat" some sense into him.

Debbie

theLword
05-31-2012, 06:14 AM
I agree with the posts above.. you are in NO way whiny. I completely understand what you're going through. Your husbands responses sound a lot like my boyfriends. At first I was really upset with my boyfriends reaction to my diagnosis. He kept telling me that Lupus wasn't going to have a big effect on my life, etc. Now looking at it I think his approach was off, but he was just in denial. Truth is that I will have periods of pain and sickness in my life and that is a lot for someone who really loves me to deal with.

I know I had to go through a period of acceptance after I was diagnosed and so did my boyfriend. Recently things have gotten a little bit better and I'm hoping they do for you as well.

steve.b
06-02-2012, 05:06 AM
males tend to have a very different way of understanding.

asamale who has lupus.....
this has helped me.

http://notdoneliving.net/openletter/cfsfibro


http://forum.wehavelupus.com/showthread.php?11692-The-Open-Letter-To-Those-Without-CFS-Fibro-…

the first link is for the origionalweb site.
the second link is the same thing, i wrote it out on this site.

i use it often when talking to people.......
because i understand it and can relate to it.
hopefully your husband can relate to it also.

CupcakeMom
06-03-2012, 11:30 PM
Hi there...I am new to this site. But I understand what you are going through. My husband is a jerk and does not support me at all either. He thinks and says that It's a load of crap and that I use it as a excuse to be lazy. He has no compassion at all. He treats me and our kids bad. It's always about him. He is very lazy. I do everything in the house. It's almost like i'm the wife and the husband...the mother and father. But if I ask him to please do the dishes after dinner so I can sit down and rest cause i'm in PAIN FROM STANDING OVER TWO HOURS COOKING...he says..."you're home all do and do nothing...why don't you do them". He just doesnt get it. He thinks that him going to work is all the contribution he needs to give. What he doesn't see is that i'm always doing stuff. Cleaning, organizing, taking care of the kids, cooking, taking care of finances, running errands, picking up after everybody including my father in law cause he lives with us...getting the kids to and from school etc. And get this...his dad owns his own business.. my husband works for him. He gets alot of breaks cause he works for daddy so he can get away with alot of stuff. My husbands best friend since childhood just got hired so now they work together. My husbands job is not hard at all. He told me himself it's the easiest job. All he does is records numbers as they come in so most of the time he has dead time like a half hour to 2 or 3. He does no physical labor at all! So of course I get upset and tell him that I do more physical work at home than he does at his job and not only that I have to deal with the kids while he gets to chat all day with is best friend. Any stay at home mom or dad would get tired and just add Lupus to that and its even worse. I can't believe he would be so cruel and say i'm lazy and that Lupus is load of crap. I wish I had a real man who cares about his family... Sorry.. I didn't mean to go all out on your post...I just hate that I see other women and men in our situation. :(

Marine wife
06-05-2012, 09:53 AM
I wish I had some advice on this one. My husband has been wonderful and actually printed out copies of the spoon theory to give to people. He said it helped him understand a little more.

I agree, get your mother in law to smack some sense into him.