Good morning all! I am so glad that I have found somewhere that I can vent, get support and be able to relate to others about my condition! The past few weeks have been very rough for me. I've tried to explain my condition to my husband but all that I receive from him when I don't feel good is that I am an "addict" or I'm walking like a zombie and other things that really hurt! I've given him literature about Lupus but just don't know what else to do. I know that stress triggers that pains in my chest as well as my legs and arms. Can someone please give me suggestions because I'm at the point that I am going to leave my husband if things don't change in my favor. Thanks :)
It is hard to explain the pain to someone who doesn't have it.
but don't give up. His ignorance is no good. pamphlets might be better than his attention span. Or having him come to the doctors with you and have him explain what you are going through.
Thank you so much for the reply. It is such a good feeling to know that others are going through the same or like situations as me. I want sometimes to just give up but I’m not that type of person. Yes, he is being ignorant and I just wish he would wake up before he loses me!
Bleedwifenmom7: I was very sick, bedridden for 5 yrs., and it was bad enough I endured the pain of it all, and i told him to leave. Why have two of us and our son miserable. it just added to pain via guilt. think of your vows to each other whatever the form. If he were the one whom sickness touched, would you want to run? I doubt those of us who were and are the sick ones have any idea. Ideals are one thing, but what we would do, how we would handle it is an unknown. You really, I am guessing, do not know what is going on inside of him.
But what the other does, or misunderstands, or runs to another, we can not know. So, maybe you would consider thinking about what can you learn from this, what can you do under these circumstances. maybe nothing right now, and I wish someone could have given me assurance during the worst physical times I'v lived thru. I know when I saw signs before my eyes of his problems, I closed them. I do know I had to care for myself, but only with God Almighty's love which I could not see either. Eventually, and that means over a very long period of time, did I come to realize that NO MATTER WHAT, NO MATTER WHO, NO MATTER, a power greater than myself is ALL I COULD COUNT ON. And believe me, I was angry with Him thru a lot of it. and I came out on the other side.
No one person can make it all go away, really get 'it,' and want to help me. Each of us, the sick one, the other one, the kids, only see a piece of it, and only when they are actually ready to open their eyes, if they do. It is so much easier to be angry at someone than to feel the pain inside our hearts and bodies.
A doctor once told me, your body will heal itself. All we can do is try to alleviate the pain and discomfort until that happens. I can't say much about marriages, I think few can. we can only do what we can each day with what helps us at all. It comes down to accepting what we can or what we have, like I don't cook, just sort of nibble thru the day; my husband is passed on. and he was not a saint. for part of the time he was good to me
and I am fortunate to have good memories, but he is not here. the outside looks pretty now at days' end, and the house doesn't care if it is picked up or not; there is nothing today I can do about it. I'v done
what I could, just finish off the day, i don't have anything more in me to do anything else.
St. Rose. Thank you so much. I need so much support right now. I feel worthless.
I totally agree with the above. Take your husband to the doctor with you. My husband used to look at me and say that you just want to lay around.....I had to remind him that that is not me. I have worked all of our 21 years of marriage and I am the type who couldn't sit still for ten minutes. It would hurt when he would make little comments and then I would try to get up and o something only to prolong the flare up . I started having talks with him ,at our quiet time, and explain how I want to be like I was before more than anyone. But what I realized is that tat was his way to try to motivate me. Of course it didn't work because when we are not on accord, I hurt more because of the stress. Men think so different than we do but I think it's the only way he knows how to try to help you. Talk to him and try reading the pamphlet with him. Tell him that you want him to understand what you are going thru because you really need his support. But like I said some men just don't understand,they were raised to either keep moving or take a Tylenol and go to work.
I'm so sorry. I'm in the same situation. People just have no idea what it's like. The struggle minute to minute, at times. I don't know the answer, just stay strong, take the meds you need, screw what he says, and try to sit him down with literature or something, but that has never worked for me. Guys just don't give a ****. I'm sorry. I wish u well & happiness.
A lot of people have no idea what lupus really is..they may know its a chronic illness that's 'kinda like arthritis' but in my experience that's about the most of it. My husband (ex husband now) never once went to a doctor appointment or test with me over the 2 years it took the doctor's to diagnose me. Not only did it hurt my feelings that he didn't seem to care, but it allowed him to remain uninformed about my condition. His lack of empathy and ignorance about living with lupus eventually indirectly led to our divorce. I never wanted to push him to go with me but I wish I would have more now; try to talk to your husband about what you're going through and ask him to go to the doctor with you...he may just be scared, some people want to be able to fix everything and when they cant they would rather ignore it and ignorance is sometimes bliss. I'm sorry you don't have a support system at home, maybe meanwhile a talk with your Pastor or close friend would help, at least then you have someone to turn to.
I am new to this group and I can so relate to your story. I was diagnosed with Lupus this year in May but I suspected I had it for 3 years prior to being diagnosed. Before my diagnosis, my husband thought I was a hypochondriac always googling things and going to the doctor, but had I not done these things and ignored them, I still would be suffering. I was originally diagnosed with RA. Upon going to Memphis in May and becoming practically ill, I was finally diagnosed with Lupus because I finally got the Malar butterfly rash on my face. My husband has not went to any of my appointments with me and I have tried to explain the disease to him as best I can, giving him a pamphlet and literature from the internet, but all he does is say "Pray" or it will be "Ok". I even suggested he get in a support group to help him deal with my illness because I know this is affecting him as well and I am sure it is affecting your husband too. I got a semi-break through when he started talking to his son and I discovered that he feels like if he talks about it, it becomes real to him and he doesn't want to think negative. Does your husband have anyone he can talk to that he would honestly open up to? Since talking to his son, when I am hurting really badly, he aids in helping me walk when I need it and encourages me to rest. It is still a long road we have to go because he still does not understand the disease which is why I sought out a group of people who do! Let's be of encouragement to one another and come up with some solutions together!
I am sorry you also suffer from this condition. It is an awful one to have. Maybe he could come with you to the appointments and see what exactly you have to go through and get advice from a doctor. I suffer from this and I work a lot. Also my life is very stressful so yes stress causes the pain to be worse. If you want to chat anytime about flare ups or in general I would love to talk to you about it.
Cass.
Hello. When were you diagnosed and how has it affected your life thus far?