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My husband doesn't believe I am sick

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Posted 3/30/2008 3:39 AM (GMT 0)
My husband doesn't believe I am sick or in that much pain. I lost my job because of missing too many days and my husband just thinks I am being lazy. I have gave him things to read and taken him to Drs appointments but he still doesn't believe me. We just moved and then I got sick with the flu and now I have been in a terrible flare for 3 weeks. He doesn't care....he just tells me everyday that I better get a job. He doesn't even want to add me to his insurance because he says if I don't get a job we can't afford it. I can't even go to the dr anymore and I am so worried that I won't be able to get my meds next month. We have 2 children 6 and 7....he doesn't help with anything around the house. He didn't much when I was working either. He wants me to get a full time job again and continue to do everything for the kids and keep the house clean. I am sorry I am venting but does anyone have any ideas on how I can make him understand more about Lupus?
Posted 3/30/2008 4:24 AM (GMT 0)
I'm sorry purplerose,

Unfortunately, your husband has the "but you don't look sick" syndrome. I wish I could help you make him understand, but I don't know how. My husband was the same way, and the only thing that made him believe was when he had to take me to the emergency room because I was peeing pure blood. That is something I don't wish on anybody. sad   You've taken him to doctor appointments, but have you asked your doctor to explain to your husband exactly what lupus, and everything else, is and what it can do to your body if you don't take care of it? Has your doctor told him that he wants you to quit working so that you can take of yourself?

As far as help financially, have you tried to apply for disability yet? Lupus qualifies as a disability, and your children also qualify as your dependents. You wouldn't get as much as you would working full time, but it is enough to help pay some of the bills.

Good luck to you.

Robin

Posted 3/30/2008 6:14 AM (GMT 0)
((Renee))

I am sorry about your husband. It is extremely unfortunate when a spouse or loved ones don't fully understand this disease or the strain it can cause on relationships. I am also going through the same circumstance with my husband. All of my "anxiety attacks" as they called them are now being blamed on lupus flares. I haven't yet been diagnosed with Lupus but I am developing new symptoms everyday and it's extremely scary. I see my new pcp in May and can hardly wait. As for your husband I recommend you have your doctor sit down with him and explain everything there is to Lupus. Have him have a one on one consultaion just with your doctor. I would also explain things to your doctor and see what he says. If you hubby still doesn't get it then i would suggest some counseling for both of you so he can get a full understanding where you are coming from and where he is coming from as well. I hope this little bit of advise works out for you... Keep us informed

~Natalie
Posted 3/30/2008 6:46 AM (GMT 0)
I have to say your husband needs a wake up call. Lupus left untreated can kill you, heck even treated it can be darned dangerous. I am sorry, but I have no sympathy for him and think he needs to grow up. If he doesn't get it and will not agree to counceling then I would show him the door- but that is me. You cannot do everything at home and for the kids and work full time with lupus. I have to say that when I hear about family treating others like this it just makes my blood boil. I am so tired of everyone assuming that things like lupus and fibromyalgia are not real illnesses. I have to say maybe he needs to have a chat with a few of us here, maybe seeing how bad things can get would give him a wake up call. Also he needs to consider the fact if you don't have insurance the chances you will ever work again are nill. The chances you will end up with thousands perhaps even hundreds of thousands of dollars in medical bills is extremely high. Insurance is the only thing standing between you and a mountain of debt that will crush you and your family.

You have no control over how your husband views your illness, but you can make it clear his refusal to see the truth is unacceptable.

It is possible his attitude stems from the fact that what is wrong he can't fix but the fact he doesn't want to put you on his insurance makes me think this is less fear and more callousness and lack of caring or compassion. Sorry, but it does not sit well that he could put you on his insurance and doesn't want to no matter the financial situation because it just makes it seem like he does not care about your health.

I think maybe if he spent some time at a lupus support group he might have his eyes opened. Heck talking to us here might do the same. BUT if he is determined to think you are lazy and not sick then he will continue to believe that. I nearly died and most of my family still thinks I am making up my illness. Thankfully my husband has never been part of that group, in fact he was the one who kept pushing me to see doctors when I was ready to give up and die.
Posted 3/30/2008 12:41 PM (GMT 0)
I am so sorry that you are going through this with your husband.  When I hear about people like this, I wish so much that they could spend even just a week in your body to see what living with lupus feels like. I don't know if there is a way to make him understand,especially if he doesn't want to - it sounds like he's in complete and total denial.  I don't know if your doc can explain more to him - how serious this disease is and how very real the fatigue and the pain and the feeling sick everyday are all very real. I don't know if someone has already given you this site to look at, but there is something called The Spoon Theory at a site called butyoudontlooksick.com .  I'm not sure if reading the Spoon Theory would help your husband understand things or not. As a last resort, you could lock him in a room with all of us here at HealingWell and I'm sure by the time we let him go, he'd understand how bad lupus is . I am really sorry you are going through this and I hope that somehow, someone can get through to your husband and that he can understand just how serious lupus can be.  Hang in there and know that we are here for you. Take care
Posted 3/30/2008 2:09 PM (GMT 0)
When I was first ill, my husband was convinced that I had depression and this is what was causing everything. I brought him with me to see my rheumatologist and that kind of changed things around. He still gets upset sometimes when I lie around the house on the weekends and don't want to participate - but when I am feeling good, he knows it and takes advantage of the good time spent with me. We have been in therapy for the last year and it really has helped.
Posted 3/30/2008 3:32 PM (GMT 0)
Hi everyone,

Thank you so much for your help and support. My family thinks I should just give up on him because it hurts them so much to see me hurting physically and emotionally. The insurance thing is that is really bothering me right now. I am just so afraid not to have my meds anymore. Even though I still have flares alot I dofeel better then I did before I was on the meds. I just find myself wondering if he really loves me. :(
Posted 3/30/2008 4:22 PM (GMT 0)
I hate to say this but I agree with your family. The insurance thing is a really big red flag- to me it says he doesn't give a @@@@ what happens to you only about the money and that isn't love. Add to that the stress he causes you and his expectations for you physically after being at your doctor appointments and I think he may be at least slightly sadistic. Why else would a make torture someone who is sick, because that is what expecting you to work full time and do everything else is considering the pain and emotional stuff it causes.

As to getting your meds, if you boot his butt out you can apply for help from a University medical center, or there are programs to help get your meds. At the top of the forum is a thread called LUPUS RESOURCES, I did extensive research into help for meds and one of the posts in that thread has the results I found- there are a lot of programs available. Apply for disability. Your husband sounds like he is so selfish and self centered he refuses to believe what is right in front of his eyes. His attitude and actions will make you much sicker and could kill you.

It is possible telling him you want him gone could open his eyes, but it is also possible it could have him admitting he wants out. One warning if you decide your marriage is over he may try and use your illness against you in a custody case or try and claim you are too lazy to take care of your kids. Your doctor needs to be on your side if this happens and your family. It is sad when marriages break up, but being exposed to the toxic environment you currently live in could do more damage to your kids than having a broken home but happy parents.
Posted 3/30/2008 4:41 PM (GMT 0)
I agree with redrose Renee. It is heartbreaking and scary to think about leaving a marriage, but it is even scarier to think about what could happen to you if you give in to his demands. There are a lot of resources out there to help you. Not only do you qualify for disabilty, you may also qualify for state medicaid depending on your last three months of income(including his). I know some people are too embarressed to ask for state aid, but that's what you and the rest of us pay taxes for. After being on disability for 2 years, you can apply for full medicare coverage, you get hospital coverage right away.

He is not helping you, and it seems that he never will. Talk to your family about helping you to get out, if that is what you choose to do. It is time to think about your and your childrens welfare. Since he won't put you on his insurance, I'm assuming that your children are not covered as well? That's not fair to them, and it is certainly not right. You need to look at the big picture and think of all the pros and cons of your situation. If the cons out number the pros, it's time to get out while you still have the strength.

Posted 3/30/2008 6:23 PM (GMT 0)
I guess I am just so afraid of being alone....:( This is my second marriage and now I am over 40 and sick, so who would ever want me? Our children are not insured. When I was working I had them insured but my husband lost his job and was unemployed for 5 months so I had to let the plan go for the kids. We ended up losing our house and 2 cars because he took so long to get a job. We were living off my income. I have decided I am going to give him one more chance to reconsider adding me and the children to his insurance and I will get a part time job. If he can't agree to that then there is nothing left for me to do. Sometimes I guess being alone would be better....maybe eliminating the stress he causes me would be a good thing. Your have all been so much help....it just helps to have people who understand to talk too. God bless all of you!
Posted 3/30/2008 6:56 PM (GMT 0)

Hi I'm very sorry that your husband feels that way about your illness, some people only want to believe what they want to, I know what it is like to be in your situation without the insurance, right now I have no insurance coverage for about two months, when I was first diagnoise with lupus I had a very good paying job and my job provided insurance for us at a reduced rate, and when I became very sick and my job could no longer keep me,  I had to find a part time job that would give me time to be at home when I have a flare up, and it was driving a school bus....well driving a school bus does not pay much and I could not afford the insurance confused  so I applied for medicare and was accepted, I recently got a pay raise, and it was time to reapply and they told me that I don't qualify and now I'm without insurance and I have blood clots which requires me to see the Doctor twice a month for a protime, I need surgery for my back and my remy visit and I have numerous medication that I have to purchase, thanks to wal-mart for there cheaper rate for medication and applying for a prescription discount card to purchase medication. There is hope in everything that we do and go through, just dont give up and I wont either because I know God will work it out for us, I know that there is a blessing coming out of all of this, I can not go to the Doctor right now but I  have enough prescription refill  so that I can still purchase my mediciation, we must keep going, and please pray for me that I can get some health insurance, but if I dont anytime soon I will just have to find a Doctor that goes on a low income pay scale fee, and as for the hospital they will have to give me service or send me to a hospital that will.  WHERE THERE IS A WAY THERE IS A WILL.

Posted 3/30/2008 7:08 PM (GMT 0)
Oh how I can relate to this post...
When all these terrible things were happening to me.... my husband had no sympathy for me at all.... I worked full time at my job and by myself.. I had a small hair salon in large retirement residence... I did 60-70 heads of hair a week, plus all the cleaning, the phone and laundry alone.... My body was shot...
Finally, I got the diagnoses and started this medicine and I was much better.....but by this time, I'd had surgery for some other problem and then while recooping.... found out we were moving back to our home state of Oklahoma.... I have not worked since then... I am on my husband's insurance and am happy about that....

I told my husband, he better not get sick because, I won't be helping him....he just looked at me... but I ment ever word I said... One night I was so bad and he wouldn't take me to the emerg. room I had to call my daughter... oh brother, you talk about hurt... that is when I told this.... and I won't.... I'll call somebody but I won't take him....that is mean, I know, but I cried a tub full of tears over that night...and today, it still hurts....
Posted 3/30/2008 11:18 PM (GMT 0)
I don't mean to be rude but I dont think he has "you dont look sick" syndrome. Especially if you are in a serious flare, because I bet you look VERY sick. I think he has a "jerk" problem. I wish I could smack him for ya. Especially since I bet when he is sick he is the biggest baby. To tell you the truth my boyfriend is very good about me being sick. Especially since I threw some laxatives in his food for making me cook him dinner and clean when I was so sick I couldnt stand for more than 2 minutes. Since that night he has understood what sick is, and has been so much more helpful * grinning*:)

PS I am really sorry he is being hard on you and I hope things change for you. Flares are bad enough when you have helpful people around you.
Posted 3/31/2008 2:03 PM (GMT 0)
Renee, I don't know what meds you are on, but depending on what you take, it could be dangerous for you to just stop them if they run out. If you think you are going to run out and not have insurance, you need to drag your husband to the doctor so the doctor can explain how important it is that you are on these meds. If your doctor knows that your husband is with holding medical insurance from you, he might be able to do something to help. Regarding your marriage, you ultimately have to decide what is best for you. It's easy for us from the outside to try to tell you what to do, but situations like these aren't always black and white and whether or not you decide to stay in the marriage or not is a huge decision and I'm sure a very difficult one. Just trust yourself and your instincts. I am glad to hear that you have good support from you family. It sounds like if you did decide to separate, your family would be there for you. I know I said it before, but we are here for you. Please call your doc about your meds. Take care. (((((Hugs)))))
Posted 3/31/2008 4:33 PM (GMT 0)
Hippimom is right, we had a member nearly die a few weeks ago because she stopped one of her meds without consulting her doctor. Your doctor needs to know your situation because it could mean the difference between you living and dying. Does you doctor even know your husband does not think you are sick? That he thinks your whole problem is being lazy? Because I know my doctor would advocate for me if I ever encountered a problem like that. She offered to explain things to my 10yr old who has decided I am not sick, and even that I lie about being on medication. She has entered the mouthy teenager phase a few years early.
Posted 3/31/2008 5:14 PM (GMT 0)
Hi Renee,

   I'm sorry to hear your husband is putting so much stress on you with his unwillingness to understand lupus and what it is doing to you.....(((Hugs))). Some people never get it, but there are many that do eventually come around and support their spouse the way they should. I pray your husband will be one of the "few good men", who will put you first and stop being so selfish.

    I'm not really one to give advice on marriage since I wasn't able to find one that was willing to hang around during the rough times. I'm 50 now and I do get lonely sometimes, but I have family close by that are always here for me when I need them. I kinda like having the whole house to myself most of the time... :-) .

   This disease not only changes our lives, but everyone around us. It takes alot of love and compassion on all parts to deal with the ups and downs of lupus and other diseases. Please take care and know that you have friends here to talk to anytime. Keep us updated. You and your husband will be in my thoughts and prayers, as well as your kids.

                                                              Babs

Posted 4/2/2008 10:27 PM (GMT 0)
Your husband sounds like he needs a wake-up call. I know how you feel. My husband felt the same way when I was first diagnosed. No matter what I gave him to read or what the doc said.. I was not sick and it was all in my head. Well... he had a severe drinking problem and his judgement was impaired. I certainly don't want to pry, but could there be other things going on to color his judgement? My husband has since joined AA and is working on his issues.. including depression which he is being treated for now. Now that he is being treated, he is a totally different person and completely understands what I am going through.

My point is.. is may not be that he doesn't love you, it could be an undiagnosed issue within himself. Anyway..just tossing it out there. As far as the insurance, I would absolutely demand that I be added along with the kids.

HUGS

Ti

Posted 4/5/2008 12:00 AM (GMT 0)
Hi Renee,

I am soo sorry about your situation. It's always awful when someone is constantly telling you are not sick and that it is all in your head. Those are the people we generally stay away from. However, in your case that is not exactly possible since you are married to the problem. Well here is my two cents, and remember this is only my opinion, you need to figure out your priorities. And the first two should definately be you and your kids. You are the only person in your body and you know it the best and you should listen to it. you also have your kids and their health to take care of. As for your husband he is a big boy and he can take care of himself. He is suppose to be the man of the house and should take care of the responsiblities that it entails, and that includes taking care of you and your health and your kids. Remember stress is not exactly a good thing for us and it does not sound like your husband care about that. You have your family and you should use them and let them help you physically and emotionally. I hope that you can figure something out about this situation that you are in. You and your kids are in my thoughts and prayers. Stay strong.
Posted 4/6/2008 3:31 AM (GMT 0)
Hi Everyone,

 

Thank all of you so much for your support. I still don't know what to do. My husband has agreed to add me and the kids to his insurance but he says if I can only work part time then he will need to changed jobs. This has been another problem with my husband. He is in sales and has always had commission only jobs. Finally he has got a job that pays a guareenteed salary plus commissions and he isn't happy. So now he says its my fault(ie. because I can't work full time) he has to go back to car sales because he has a better chance of making more. So who knows if I will have insurance for long. It doesn't even become active until May 1st. The stress always seems to be high around here. Anyway, thanks so much again for everyones ideas and support. You all are so great!

 

Posted 4/6/2008 5:49 AM (GMT 0)
I was only planning on reading posts tonight until I read this one. I must say that I was just in your shoes. I was with a man for 4 years until 2 weeks ago when I filed for divorce. I got sicker and sicker these last 2 years and he did not care for me one bit. He did when it first started happening by taking me to the emergancy room and helping care for the kids. Then I noticed the sicker I got, the less he did to help out around the house and with the kids. Then in November I had to have surgery and wow! He left me lying in bed for days without even coming in to check on me, I didn't enven eat for 13 days. That is when I realized I had enough with him. Then in December I became very ill with a MAJOR Lupus flare that was affecting my heart and lungs. Again he dropped me off in the ER and went to work! It took me until the beginning of March to start feeling better. Then, the 14th of March, I threw him out. I had to. The daily stress of having someone around that didn't love or care for me was worse than having him here. I have gained 7 pounds back in this short time since he left. :) I did have to have him take our 2 year old with him because when I am ill, I can't take care of him and have anything left for my other kids or me. The Spoon story above is me. I live that every day and when you have the intense hurt and anger in you caused by someone you love, it will take most of your spoons away. Leaves you vulnerable to this illness. It was hard to get up the gutts to break up with him, but whooooo , within a day I felt the relief. I didn't even cry. I can do soo much more now and have had a couple extra spoons every day. I am happy with the choice I made, to be healthier, happier and free. It is you, in your heart, that knows what is best for you. I hope that when you think about your choices you put ALL fear of the "what ifs" away from your mind and think about what is best for you. Our minds are stronger than what we give them credit and you will move on with a happier you in whatever you do in your life. You are alive and here today. Anyways, sorry for jabbering. I'm not always good at putting into words what I am feeling. I just don't like to see another suffering in such a needless way. I know how you feel. Good luck and please let us know how things are going.

Luv ya

Posted 4/6/2008 3:23 PM (GMT 0)
Renee, I am so sorry he is blaming you for his dissatisfaction with his job. It sounds very irresponsible to change from a job with a salary and commission to a commission only position, especially when he is only just qualifying for insurance. It definately sounds like he needs to grow up and become more responsible.
Posted 4/6/2008 5:35 PM (GMT 0)
Renee,
I am so sorry you're having these issues with your husband. So many of us here on the board have had to deal with someone in our family that doesn't believe we're really sick (me included). My ex-husband would threaten me with divorce, tell me it was my fault we didn't have a bigger house, that he was stuck in a dead end job, that we didn't have more money saved. After years of hearing that thrown in my face I filed for divorce. My sister and her husband decided that they thought I was making all this up too and sided with my ex. To this day I still am not in touch with my sister. The kicker is she has Lupus too but thought it was all in my head thinking I had it. My lab tests are worse than hers ever were and last month I was approved for disability and will be receiving back pay from 2004 when my divorce became final and I quit my job. I guess I'd like to tell them I told you so but it isn't worth it.

My advice would be to go to counseling. If counseling can't get your husband to see the truth, that you are sick and those vows that he made before God "in sickness and in health" were just that ... a vow that he took; then it's time to re-evaluate your life. I waited 28 years to leave and let me tell you I feel like I wasted my life on my ex. Don't waste what valuable time you have on this earth.

Most of all remember that we all understand what you're going through and we're all here for you if you need an ear or a shoulder. Take care of yourself and don't let him beat you down. We believe you.

Hugs,
Posted 4/7/2008 12:38 AM (GMT 0)

Hi Renee, Boy he sure reminds me of my first husband. Selfish and immature. I know there are always two sides to everything. but if he didn't mean for better or worse in sickness and in health than tell him to hit the door. He talk the job he's got. He don't like it tell him to get a diffent one. How dare he threaten not to give his wife and the mother of his children insurance. No doubt because he has things of his own he wants to buy for his own pleasure.  Oh sorry I was thinking of my first husband!

Sweetie 40 years old is just a baby. There are a lot of real men out there. I promise you don't have to be alone. if your family see's what's going on you might want to take at little bit of their advice. Mind you not all of it because it's your life. You got to take care of yourself for your kids not for him. Ok I'll shut up. I did meet a great guy after I told my first husband to take a hike. But that's a story for another time.

good luck

hugs

carol

Posted 4/7/2008 2:34 AM (GMT 0)
Thank you all so much....I am just so depressed and feel so hopeless. I don't think I can fight anymore. I am very close to just giving up on this marriage. You have all helped me alot!
Posted 4/7/2008 6:43 AM (GMT 0)

 Hi im realy sorry to hear about your problem but you need to worry about you and your kids because it sounds like he dosnt give a damm im sorry to sound so blunt but if you dont think about you  your kids wont have you their to take care of them their are goverment agencies that can help you i know because in 2005 i was a working single mother of six children and i worked as a waitress i did ok then i started getting sick more and more until one day i couldnt get up to go to work well its 2008 and i still havent been back to work since i just got my disabilaty but im still here for my kids its hard but you have to take care of you and if he cant stand by you then i say its time to get out i hope that everything works out for you and in the end their is just one thing left to say .      { people will do to you what you let them  } yeah   yeah          

        mamarose

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