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Life With Lupus

How do you to make your spouse or partner understand?


#1

Ok first I want to start out saying I love my husband with all my heart and he is a good man. He just does not seem to understand what I go through when I feel so bad. I cannot count how many times he has said that he does not understand why I am so tired. I try to explain it to him but he just cannot get it. He also says I look fine so what is the matter with me this time. He does not understand that each time he says stuff like this it makes me stressed out which again makes me sicker. I have again tried to explain this but again it just does not make since to him. I have gotten to the point that if he is starting to stress me out I explain to him that right now is not the time and that he just needs to let me have some room because he is getting ready to make it worse. He does help out with some things around the house. I cannot do the laundry anymore because the washer/dryer is downstairs and my knees just do not do stairs anymore. I know I am brave letting him do the wash LOL! I was just wondering if anyone that has more experiance with this has some tips to try to get him to understand. I have asked him to educate himself but again it is like he is just reading and the information just does not stick with him. I know he loves me and I love him, he just really does not understand! HELP!


#2

I can't see to get what I am experiencing with Lupus across to my husband, either. So, the point I am making here is, I am glad I found this group-everyone here understands and can empathize with me, and you, too. The outside world has no frame of reference, so can't understand.

I would look at moving, too, to get away from the stairs. My knees have kept me from doing the things I love, like riding horses, for years now.


#3

@Ann A thank you so much for the link! I watched this and found it very inspirational! It feels good to finally find someone that understands that I am not just making this up and that yes I do look good from the outside but the inside does not match the outside! You have helped me a great deal! I am showing my husband this tonight!


#4

@RJQ yes I am very happy I have also found this site! It is very nice to have people understand and not just judge you for what they don’t understand!


#5

I have this problem with my wife. She always tells me things like, “I don’t understand why you are so tired lately”, or “why cant you do the things you used to do?” “Isn’t your medication working?” I love her and I work 40 hours a week, do laundry, wash dishes, mow the lawn, care for the children, go shopping, and I have days when I stagger, forget things, have difficulty thinking, experience nerve, joint,pleural, pericardial, and kidney pain, and I still try to push through all this, I told her if I keep going like this I am scared that I might have a nervous breakdown or end up in the hospital. My plaquenil definitely helps, as prior to being diagnosed, I remember long bouts of fatigue and depression along with the pain. But symptoms still remain, and a common illness to others is debilitating to anyone with an auto immune disorder. Just nice to have others out there to talk too.


#6

Hi James, maybe it would help to have your wife read some of these posts? I am trying to get my husband to read them, just to give him the idea that I am not alone with this, nor am I a hypochondriac. He used to tell me things would be better if I could just “get a job”. I haven’t been able to work since 1995, and only part time then, until the fatigue just wouldn’t ever let up enough to let me continue to work. Perhaps if your wife sees that this isn’t something you have made up to avoid working harder, but that a great many people are experiencing, it might help her to understand.



James said:

I have this problem with my wife. She always tells me things like, "I don't understand why you are so tired lately", or "why cant you do the things you used to do?" "Isn't your medication working?" I love her and I work 40 hours a week, do laundry, wash dishes, mow the lawn, care for the children, go shopping, and I have days when I stagger, forget things, have difficulty thinking, experience nerve, joint,pleural, pericardial, and kidney pain, and I still try to push through all this, I told her if I keep going like this I am scared that I might have a nervous breakdown or end up in the hospital. My plaquenil definitely helps, as prior to being diagnosed, I remember long bouts of fatigue and depression along with the pain. But symptoms still remain, and a common illness to others is debilitating to anyone with an auto immune disorder. Just nice to have others out there to talk too.

#7

Whoa, Ann! Sounds like your ex-husband found his Karma! That is so sad, when just working to understand your mate would make things so much better.



Ann A. said:

My marriage did not survive lupus. When I was 26 years old I gave birth to our second child, against the advice of my physicians. The pregnancy and the year following were horrible. My husband would not help me with the children or the house. He said he really could not understand how my ability to function could change over the course of a single day (mornings being impossible, etc.). Unfortunately, several years after our divorce he too was diagnosed with autoimmune issues. He died two years ago, estranged from our two children and two children from his second marriage. He was a very lonely and sick man who died in a movie theater.

#8

Do you just think that he is just still in denial about your situation?

Maybe if he went to the doctor with you the doctor could break it down to him, thats what I did, and my husband gets upset, because he doesnt know how to stop my pain and it fustrates him not being able to make it stop.

I hope things work out and be patient with him, because its hard on our husbands and family to make the adjustments also.

God will work this out for you, if you ask him. And I will pray for the both of you, cause life with lupus is not always easy, but we are warriors and we WILL overcome all of our obstacles with Gods help.


#9

The absolute best thing I ever did was take my husband with me to the doc with me. He could ask questions and get real answers.


#10

Well, they say they understand and I know my husband and children care deeply but they don't it's hard for them to see their love one's in pain, unable to move, sleepy all the time and yes it frustrates me more because I was a very activated person before all this carp hit me 9 yrs ago. Very independent and day by day it is being taken away. Living with lupus and other immune issues and essential thrombocythemia . I can't really blame them for running and finding peace at work friends and so on if I could I would leave this body for awhile and take a brake. But then again I cry because I feel all alone because they don't take the time to educate themselves on what's going on. There's no happy middle. At lease I haven't found one. I believe in God but find myself very mad at him for doing this to me, as I have and still do my to give a hand when up to speed. Bless you all


#11

I’ve struggled with this illness for years but, I was just recently diagnosed! I was diagnosed with pots syndrome when I was in my 20’s! After new research they only discovered in the last three years that pots is caused by autoimmune diseases! Over the years, I would ha e two horrible years then what I would call a pots remission! I now understand that it was a lupus remission! This horrible flair started while on a 25 wedding anniversary trip to an all inclusive vacation to Mexico! I was working as an RN 7 - 12 hour shifts and, I knew better! It only took a month or so to become very fatigue! I decided to book a vacation to catch up on some rest! By the third day of the " sunny vacation", I was deadly ill! I left Mexico with twenty pounds of fluid on my body! I had to buy a pair of slippers to wear on the plane home! I couldn’t breath and had a horrible cough! Every step was painful and I could not pass urine! My heart was racing and my head pounding! I’ve been sick often and was never treated too kindly by family so I’m not one to show my pain! I couldn’t hide it! I was in tears at the airport! All I could think was, I’m gonna die in Mexico! I thank god everyday that I had the nursing critical knowledge that I know without a doubt saved my life! I started coughing hard and blood clots were in the palm of my hand! I didn’t share this finding with my husband or sun! I simply sat down and wrote on a napkin what medications to buy me from the airport in Mexico! They do not require prescriptions for medications! I always knew prednisone made me feel better! I took 100mg, 120mg of lasix, 4 baby aspirin for the severe chest pain and blood clots and two antibiotics for the large concerning open quarter size mosquito bites on my lower legs! My checks had a horrible butterfly rash along with the rest of my body! By the time our six hour flight landed, I was breathing! My husband drove me to the er as I slept in the car! I refused to get out and demanded we go home! I stayed in bed for six weeks getting up only to go to the bathroom or grab something small to eat! I had no clue what was wrong with me! I hurt so bad the sheets burnt my skin!
Three years later now, i still haven’t found the old me! i would sit on the couch while the world seemed to pass me up! My hair was falling out! I woke up every morning with tons of edema! It would take me three hours to get my muscles and joints to move! I developed raynauds syndrome in my toes and hands! My husband wAs angry that I wouldn’t return to work! I tried to explain that, I couldn’t do it!
I have kept a spotless home, handled finances, raised two biological children and five adopted children, never missed a parent teachers conference or sport event and managed to keep a full time job as an RN! How in the world could he now yell at me and call me lazy! Couldn’t he see that something was wrong! I went to my family doctor several times explaining my symptoms and as always he would say, he didn’t know? He hand prescriptions for the high blood pressure and lasix for the fluid in my legs! I did start having done better days but, everyday I struggled! My husband wouldn’t give me money stating that if I wanted something then I could get my life together and go to work! All the years, I carried the responsibility! He was a co struction worker so his work was seasonal! I carried the medical insurance and the dependable income! He never helped with household responsibilities! When he did work, he was out of town! I did return to work as an er nurse! I was working 12 hour shifts and driving 1 hour there and an hour home! I made five months! The last month, I started really having memory problems! My co- workers started noticing how ill I was and asking questions! The Er docs that I worked with would beg me to let them check me out! My co- workers were awesome and tried to help me! I’d go home in tears! My husband would roll his eyes at me! I’d work three 12 hour shifts and sleep for four days! On my way home one night from work, I actually got lost? I had no idea where I was or how to get home! I called home screaming that I was lost! He hung up on me! A cop found me on the side of the road and took me home thinking my husband would take me to the hospital? I made to work the next day and collapsed! I was in a lethal heart rhythm and rushed to the cath lab! When I awakened, I was told that I would never work again! I had congestive heart failure! All the years of pericarditis and pericardial effusions had damaged my heart! I was 46 years old! The doctors had no idea why I was ill! My husband acted angry! I started the year of fighting for a diagnosis! I developed hypothyroidism and the endocrinologist was the first person to say, " I think this is lupus or ra?" My lab antibody test were all negative but I had 11of the 12 criteria and almost every complication lupus can cause! Major organ involvement! I left the state for treatment and the first rheumy appointment he started me on plaquenil without the positive Ana! Two months later, I had another horrible flair with kidney and heart involvement and started on chemo! After a year of treatment last month my Ana, antiphospholipids, ra and anti ds DNA- all became positive! My husband is helping a little and now shares his income! I’m waiting for a court date to fight for my disability! I can see him looking at me sometimes when I’m struggling to walk and I can see a concerned look but, he gets angry if I talk about it! My father is dying of cancer and there’s many days that I can’t drive myself to his house and 75% of the time he will not drive me! My friends drive me to my doctors appointments! He will not take me! I developed an instant migraine one evening! I knew it was not just a headache! I told him that I needed to get to the ER! He wouldn’t help me with my shoes and I passed out trying to tie them! I was bruised everywhere! When I got to the ER my blood pressure was 200/145, I couldn’t hardly talk! The doctor was trying to get history etc. and my husband sat there spaced out! I was found to have vasculitis! My husband didn’t come back to get me till discharge!
Six weeks ago, my husbands dad had emergency open heart surgery! There is four kids in his family! My husband planned to bring him home! I cannot take care of me??? I tried to explain to him! He tore my house up throwing things! He brought him home! He treated his father like a king waiting on him way too much! He takes him to every doctors appointment! He never ask his siblings to help! Please don’t get me wrong, I believe he should help his father and if I was well I would too!
But it showed me how little I mean to him??? I cannot leave until I get my disability! Ive been married thirty years now! I was a wonderful wife,mother and, nurse! I’m alone now!


#12

I cannot express how much I hate this diseases! I’ve promised myself that no matter what it takes from me- It will never get my soul!


#13

Thenewme; I have been diagnosed with sle since 2012 and also have a family that expects more out of me than I am capable of. However, my situation is not anywhere near as mentally distressing as yours. Some of the younger ones in the family (my niece in laws; maybe a few others, mostly in their 20’s while I just turned 40 myself) think its a game to get attention and/or get out of responibilities I have which I would normally ask for help with if I am having a"bad day". Sometimes my brothers think I’m putting on because I can go from doing good one day to unable to move the next. And I get oh, so cold. Words cannot describe how cold I get. One of my brothers said right to my face one day, " I don’t believe you get as cold as you say you do". I wanted to say really? Do you have a disease that makes you so anemic you’ve had to get transfusions? Multiple times, and you know its going to happen again??? And do you have raynauds phenomenon brought on by lupus??? But instead I said nothing. I was too weak and fatigued at the moment to respond to him so I was just grateful he was pushing my wheelchair without saying I didn’t need that, either. I get so frustrated at my family. I hope you are doing better now and your home situation is improving. Did you receive your disability? And may I say a prayer for you?