I wish my husband could live in my body for a day and night!

My husband does not understand, or even try to understand what I’m going through. If I try to explain he cuts me off and changes the subject. He makes all kinds of plans, like going hiking in the hills, and then gets upset when I won’t go. How do I get through to him? He won’t read any of the lit that the Dr gave me. He thinks my meds are a waste of money and my energy level is laziness. Anyone have any advice on how I can get him to take this seriously?

I know what you are talking about trust me… But please dont ever wish this to no one its very painfull… Sometimes my hubby dont understand neither and I get fustrated because I.wish I can do what.he does but I cant, all I can do its continue to try to explain to him how im feeling…nobody never understands untill they be in your shoes…stay strong…love Dunnia

Catherine, this is so hard to go through even when our loved ones,. do understand...and even harder when the ones we need to be the most supportive are not.

If you were walking through the house bleeding from a fatal wound it might be easier to say, "Uh, hon, could you get a towel to mop up the blood I am spilling all over your hiking boots, and better move that white shirt, because I am about to pass out....thanks hon. oh, and can you call an ambulance before you pull the camper around so that we can be out of the way when you get ready to load all the gear? Thanks, dear, you are a real peach.""

It would be so much easier if people could see the way inflammation eats away at us and if we had some kind of device, like those buzz when you shake my hand clown tricks that we could touch someone with whenever they needed an accurate description of out pain or our utter exhaustion, frustration and grief for the life we thought we were going to live before Lupus.

But you know what, even if he (or they) never get it, you can find comfort in the fact fact that WE know and we are here to support you and listen and empathize...and that comfort is real---as real as fish oil or flax seed: once it gets into your system, you will feel better, and the strength you gain from our support with start to show up in how you deal with other people in your life...i think it's like field of dreams...if you build it (your confidence and understanding of this complex disease) they will come (around to show their respect and to finally offer you the support and tlc you [we] need.

Friend, I know just how you feel. I been with my husband for almost 12 years and not untill recently he started understanding my illness. I got him some books on the matter. and The lupus magazine. and he started understanding alot more. now he tells me to go rest, he watches what I eat. so I think now he understands. So maybe get him some more info on the matter or let him read some of the blogs.

Good for you for saying how you feel. My husband, like yours I'm sure, is dear and I adore him but it hurts my feelings when he makes fun of my naps and need for down time. I think he thinks I use my Lupus as an excuse to not do certain things. If he only knew - I'd give anything to be able to do it all. He is an Ironman Triathlete so my low energy and need to take care of myself really doesn't make sense to him since he has a one track mind on Go Go Go and push push push. For us to be the mom, wife, professional, friend, lover of life - we do have to say no and I guess at the end of the day.....sticking to our guns and knowing our body will be better for everyone in the end. So, TRUST is what I need from him. Trust that I'm doing the right things right as best I can so I WILL be able to do what I can do. I do totally understand Catharine - we all do I'll bet. Take care Catharine! He loves you!

Lupus is an invisible disease! I have been sick off and on for many years and had no diagnosis until recently. I live in sunny south Florida and my husband and two sons loved the water. We owned a boat and we would fish and water ski a lot. However I would get sick a few days after the day of fun in the sun! So I would say I was allergic to the sun. I find myself over the years avoiding the fun simply because I would become ill from the sun! No one put it together until years later. I have disappointed my husband, sons, family and friend so many times because I did not feel good enough to do things. Now years later, the abuse I took from it all still hurts me. They all thought I was crazy. Once I was diagonsised they became to understand the disease. I feed them information all the time so the will never forget what I have to deal with. My doctor told me three months ago I needed to go out on diability. WELL, my husband and sons do not think she is right and the want me to keep working. So two weeks ago I started a new job and last thursday I came home from work with my legs hurting to find a red rash on the lower part of my legs and sewlling. A new diagnosis of vasculilitis. When my husband saw the vasculilitis on my legs it scared the bejesus out of him and said let me take you to the ER. So to say the least, he finaly understands.

So my friend, this journey is not easy for any of us. Just keep hammering it into his head and he will adventurely get it.

Morale of the story! Keep strong, don’t let the emotional side of things get to you and keep ramming the information down his throat. Please tell him lupus kills!

Oh ya, I am seeing a disability attorney today!


FOREVER, I said that I was allergic to the sun. Funny to hear you say that you said that too, before you were officially diagnosed. SAME HERE. This is therapy in words. :)

Hi Catherine,

My hubby did'nt think it was so serious as i told him till he looked it up and i told him i wanted himto come with me the one day and since then he never stops going and after i've chatted with the specialist's he pipes up for his questions and reads about it now....i do have an hubby on my hands now who worries stiff and keeps telling me to rest besides looking for signs that will make me ill.

Have you thought your hubby could be living in denial and can't face the facts of you being ill and by mentioning the price of drugs bsides you having laziness is his way of shocking you back to normal.

Both of you are in a catch 22 position....try your hardest to try and make him attend an appointment with you.

Unless your partner male/female are a pure saint and wearing an hallow....all lupus suffers get it to some degree some more than others.

((My heart goes out to you catherine)) xxxx

My husband doesn't get it either and I doubt he ever will. He will never take them time to learn or understand. It isn't that I don't try to explain- he doesn't listen. He hears only the parts he wants to hear. He has even been to the doctor with me. When I can't do something with him because I don't feel well he blames me for not trying hard enough or not following doctors orders. I can't even tell him the truth anymore when he asks. He doesn't believe I feel this bad every day. So I hide my everyday pain from him. I am almost never without a headache. Never does a day pass that I don't hurt. I have retreated into myself. When he askes what is the matter- I say "nothing". When I do give in and let him in on how I feel-he rolls his eyes. He says "well, go to the doctor." It is my job to feel better. He thinks that medicine is what treats Lupus. He doesn't get that lifestyle changes need to happen too. He doesn't think he needs to change because I am sick -not him. Get a new drug. Get up and exercise- you need to do more- that is usually his response. When I say I am on all they can give- that what I need is help. Help with chores and kids he says he already is. His idea of helping is taking the kids to mcdonalds. He only does laundry if his clothes need washed. Then pulls his stuff out and leaves the kids stuff in a basket for me to fold and put away. He says the house is fine. That I expect perfection. Ummmm, no, I just don't want people to feel like they need to put paper on the toilet seat when they visit our house. Of all the people in my life- he is the least supportive and he is the one I need the most. He used to be my best friend and now it is like we are strangers. Our marriage was strong- but its strength is slipping. I avoid him now. I am to tired to be intimite and to hurt to try.

God! That felt good to get out! I have had that so bottled up. I am sitting here bawling as I type!

CASSIE- wow- what a weight off my chest....

Hi Catherine,

It really does the world of good alot of the times to release things out, i've found that and really how your hubby is behaving it will make you withdraw inside yourself...i mean what's he expect otherwise when he's being totally selfish...SORRY for saying that but this does seem the issue on your hubby's behalf.

He's actually what we call here in the UK... proper old timer, where there's nothing wrong with the wife and all there job is, is to make sure the homes kept clean and everything else seen to, while they carry on doing what they feel is best.

I really do feel for you because if he's been to an appointment and really not took the time to see how bad is wife is, then it sounds like he'll never bother...actually catherine i wished i could come up with something else to make him realize but it's like he's in his own world and it's get on and suffer what you've got to.

We've had other member's add threads in the same boat as yourself and it's really such a same...when you marry your best friend and when times get hard and you need them, they turn their backs on you.

((Oh bless you mate i do really feel for you)) Loads of love Terri xxx

You sound so much like me and I've been married 30 years. Putting up with the same attitude. I wrote on a different thread yesterday and used many of the same words as you. I started to cry as I wrote so ended it quickly but sent it anyway. It's been like this since the kids were small it's just worse now because I don't have the strength any more to stand up for myself any more so I also withdraw into myself. I'm afraid of the withdrawal though because I don't want to fall into the black hole of depression.

How about a good kick in the butt!!! hes being mean and very disrespectful. I am so sorry you have to deal with that.

So many of my friends are also my husbands friends so I can't even go to them to say any of this stuff. They would never believe me anyway. To the outside world my husband is perfect. If someone needs help - he is the first to volunteer. I have a friend who is a divorced mom with 2 kids. She was doing landscaping and he volunteered to move 2 truckloads of dirt for her. At his work, at church, to our friends - he deosn't know the word "no". If there is someone in need- he does it. It isn't that he's a saint. He just wants to keep up this image of a perfect man, and his perfect little family. I beg for help, he says he does more than other men and that is good enough for him. It is my fault in a way I guess. I never used to ask for help. I was a do-it-yourselfer. I worked hard all my life. I didn't need to be treated differntly because I am a woman. I payed my way through college. I can fix any thing, build anything, do anything. I painted the outside of my house 7 months pregnant in the oklahoma heat. I repaired fences. Built shutters. My house was always clean. My children always dressed, cleaned, feed, and well mannered. I fell into the same trap that so many Americans do. Trying to keep up with the Jones. More. More. More and never give in, never give up. I was a fool. I see that now. I know every family who appears to be perfect is fighting their own problems behind closed doors. But we are all to stupid to just admit it. Well, Lupus forced me to admit that all is not perfect. But it is too late. My husband knew me as wonderwoman- and my "Lupus" self doesn't fit into what he wants me to be. I long for a simple life. I just want a house that I can call home. A place to keep my family safe. I don't need all this "stuff" around me. In fact I don't enjoy it. I don't need nice cars, 4 TVs , a big house. I just want to raise my children to be good people- not perfect - just good. I want them to love who they are- for what they are. I don't want them to feel like they have to be something they aren't because the world expects them to have all this stuff to prove they are worthy. They are worthy because they are loved.

I have at least convinced my husband that maybe moving to a smaller house to cut our mortgage and monthy bills will allow me to cut back hours at work- but he is stubborn- and won't consider a house if it has flaws. So we continue to hunt. He says it is for the kids, and maybe he has even blinded himself, but I know the truth. He could never bare our friends to know that we might have to live a lifestyle less than theres and he feels like that is a failure- and he could never look bad- remember- he's perfect.

Have you tried introducing him to The Spoon Theory ( http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/ ) or the Open letter to those without Invisible Disabilities ( http://notdoneliving.net/openletter/id) ?

BYDLS is one of my favorite resources for explaining to people what it's like (and offers a lot of good advice for travel and such).

See also this article: http://www.butyoudontlooksick.com/articles/caregiver-support-and-tips/when-your-caregiver-is-also-your-significant-other/

Of course, remember, you can lead a horse to water but... you can't make him drink. All you can do is give him the information and tell him how important it is for you that he understands what you are going through.


Thank you Shu- for both articles. They really put things into focus. Thank you everybody for all your words of encouragment and support. I am deeply touched.

Man, I really put my hubby out here in a terrible way. He has so many really wonderful qualities- or I would have never married him. I was just trying to answer this discussion and before I knew it I was pouring out all these feelings I've been bottling up inside.

I guess I have resentment issues as well. He and I both long for what we used to have. Our problem is that we just need to continue talking to eachother until we come to a resolution that fits both our needs. It isn't that he won't change- it is that it takes soooo much for me to get him to see that there will have to be some adjustments from both of us if our family will survive this intact. The fights we have - ahhh, he hates conflict- so he just gets mad and walks away and won't listen. He sees what we have worked so hard for just disappearing because of me- and I feel guilty that we have to change. But I know that God has a plan. I even posted in on the Groups board. I call Lupus "My Gift"- because that is how I have come to terms with what I have been given. (please read it if you get a chance). It just seems like my health is declining at a rate faster than his abilty to make adjustments to keep me functional. What he doesn't see is that when he is out there helping others- I am home barely able to keep our family going. I need him to begin to do things that I do around the house, not only to help me but to learn what it takes to keep this family going if the times comes that I am not able to help at all. He doesn't know how to cook, make a grocery list, manage monthy bills, and the bank accounts. He doesn't know all the "behind the scenes stuff" that goes on.

God bless this board- what a blessing each and every one of you are!

Hi Kathy,

I really feel for yourself and Catherine and although they're your hubby's after years of marriage when you both need help the most, it's like they turning their backs and it really hurts me here this especially 30yrs of marriage...but both of you becareful as your both worn out needing help, try and not to go down that hole to much because once you get depression...this so called "lovely disease" thrieves on it and you don't want to end up in a rut you can't get out of and all the tiedness and pain your getting now will feel like it's doubled on you. xxx

Kadeeeee said:

You sound so much like me and I've been married 30 years. Putting up with the same attitude. I wrote on a different thread yesterday and used many of the same words as you. I started to cry as I wrote so ended it quickly but sent it anyway. It's been like this since the kids were small it's just worse now because I don't have the strength any more to stand up for myself any more so I also withdraw into myself. I'm afraid of the withdrawal though because I don't want to fall into the black hole of depression.

Cassie ---- As I read your post it makes me want to cry for you because your life is like a mirror image of mine. I used to be just like you said about all the things you used to do. I was more independent than any other woman I ever knew and I took pride in being that way, not depending on anyone! Now is a very different story.

Thanks Tez, I am very aware of depression. When I was young it threw me on the ground and stomped on me! I will never allow depression to get a hold on me again! I allow myself a certain amount of time on the 'pity pot' and then go on with life. I understand.

Hello Kathy,

I only commented on here the other day and what's kicked in on me my manic depression...been crying all morning then it mentally disturbs me over my feelings and coping...it got an hold of me years back and i did have a break down bad i was in a state could'nt talk to nobody without crying or going anywhere.

Well it's lovely you understand mate because it's a rotten issue to deal with. xxx

Kadeeeee said:

Thanks Tez, I am very aware of depression. When I was young it threw me on the ground and stomped on me! I will never allow depression to get a hold on me again! I allow myself a certain amount of time on the 'pity pot' and then go on with life. I understand.

I too have a husband who dosnt understand. He insists that we go on foreign holidays and complains when I wont go out in the sun. Apparently I spoil the holiday for everyone, because I wont join in. However 2 years ago whilst in spain I had a flare up and I looked ridiculous (I had to cover up and only go out at night) it was like being a vampire lol.....But it shut him up. This year we are going on a cruise - I will not be leaving the ship and it is well air conditioned, he has told me he will go ashore with our daughter and I can stay on the ship - which is fine by me, I get waited on hand and foot and I get some peace and quiet into the bargain. Some people just don't want to know and are not interested in the least. God forbid that anything happens to these people xxx