Hi. I'm 37 years old and I've been married for over 13 years and I have an 8 year old son and a 10 year old son. I was diagnosed in June of this year. I'm on methotrexate, plaquenil and prednisone.
What I need help with is my husband. He doesn't believe I have RA. I've been diagnosed by a real rheumatologist and I have all the lab work. However, he thinks it has to be something else, he is pressuring me to try AP therapy or look up all these weird natural remedies. Oh and then he talks to strangers who open up to him about how they were all messed up due to some odd thing. Like today he met someone at a restaurant ( he's traveling currently) and he told him that a statin drug like lipitor caused all his RA like symptoms and as soon as he got off the drug he was cured. My husband called me and had me look up any and all drugs that I took the year before and currently to see if there were any statins involved.
He says that I am giving in to the disease because I am not running around and trying things. I want to give my rheumatologist a try, I've only seen him twice and we just got started. Why can't he just try to understand and not push so hard. It's hard to be in pain and not complain to him, because if I do, he'll just say that my doctor isn't working and we have to do something else.
How do I explain to him that this disease is like forever and it has its ups and downs. I know he loves me and is just trying to help. However, it just seems like he just doesn't want to face a life with a sick wife.
Hi Suzy, what an awful dilemma, however it hasn't been long since you were diagnosed and maybe he is in denial, perhaps you could direct him to the Arthritis Foundation to talk to one of the people there about his beliefs etc, or tell him to try reading a few posts on here. Unfortunately everyone is different and this disease affects all of us differently but you can be sure it can be very hard to treat even for the top rheumatologists all over the world they all have patients who come under the "too hard" category and no matter what therapy they are on they are stiill in pain, It is going to be a long road and you are going to need his understanding and support so starting early to get him to agree with your choice of treatments will be beneficial, any stress can make you flare so you don't need to be at odds with each other. Hopefully it is just the fact that he is coming to terms with it and eventually he will understand that it is an ongoing trial and error process with most of the drugs, give him time and tell him that you appreciate his help and his input, however he must listen to you as well. Best of luck, Janie. That's right he doesn't want to face a life with a sick wife and he is running around being a lunatic trying not too.
Suzy, Welcome to the board
Sorry your hubby is in denial, that happens a lot
Anyway feel free to jump in on any topic and ask or post away
Looking forward to getting to know ya!
Hi I am 35 and have been married for 16 years and have a 12 year old son and a 4 year old daughter. Whatever you do please don't give up on your rhuemy so soon for your sake and the sake of your children for anybody, you are the only one who knows how you truly feel. it's frustating for most of us with our loved ones to accept this i think they feel so helpless. But that is just my opinon. Sorry you probably don't want any advice from a husband i know we don't listen. LOL
I wish you and your family all the best of luck to get through this time
PS has your husband been able to go to the rhuemy with you and see the test results himself. thats how we are you can talk till your blue in the face but if you put something in our hand we can see we tend to believe that . for the life of me i don't know why we are like that. hope you have a pain free night.
I can't comment on or help you with the "husband issue" as I've never been married - BUT - I deal with the same kind of thing with some of my well meaning / well intentioned friends. Honestly it drives me crazy and when I let it, actually even makes me furious at times.
At first I tried sharing with them clinical information on the disease and treatments and resources like the "...spoon theory, but you don't look sick..." etc., after patiently listening to all of their suggestions for various "cures" and "causes" but to no avail. And their agenda isn't fear of facing /dealing with a sick spouse, so I don't know where the motivation comes from exactly. I do know that it has come close to driving me crazy to try to get them to understand that that is the last thing I need from them in the way of support...
So for now anyway, I have just decided to deal with things in the way that feels right to me and that my "real medical support" is just not going to come from these particular people in my life. And I am trying to just take it for what it is, which misguided seeming or not to me - it is still emotional support as they are only doing it out of love for me...
Just my thoughts...So hope it helps a little or that someone with some husband type of advice for you comes along soon.
Regards,
Melly
Dear Suzy, this may be the hardest and the bravest thing you've ever done! It is so hard to go against those who 'don't believe we have this stuff',(especially the spouses) it is difficult to understand this disease, but honestly we must trust our doctors. Please know we are all supporting you and hopefully your husband will 'come around', and see the treatment is what you need. My heart breaks for you that he doesn't support you. Remember we are here 24/7! LyndaSuzy, I still feel your pain. I was dx in January and started therapy in late Feb. Hubby has come a long way, but has a long way to go. Like yours mine tried to stay in denial and was focused on you have a job, and by God you've got to be there. I did and pulled over and threw up...yep...and taught school all day and would come home and be exhausted, because of the treatment and arthritis and psoriasis. Earlier this summer he wanted me to substitute teach and work in a grocery store at night. He saw what working at the grocery store did to my health in late July and August. He insisted I quit.
Hubby has come a long way...we just had our second appt. together today...of course I have had them since the begining of the year. He just watched the Remicade today and watched the whole reaction process. He also asked the doctor about pain meds(he is a drug and alcohol counselor...and believes that everything we have is made worse or better by the power of the mind) My doctor looked at him and said I have people that have to take a pain pill the rest of their lives at night. He didn't ask much more until I have flared recently. I write my pain pill doseage down. I am TERRIFIED of the ramifications of being addicted(family history and I would probably lose my marriage and my kids). Today on the way home from the Remicade...feeling as sick as a dog and I must have been white, 'cause he went shopping at REI after and I stayed in the car. Went in to get him 'cause I just wanted to go home. He looked at me and said..."you're sick and let's go...but this is my FAVORITE store."
All of this to say. Yes! I believe the power of the mind...I truely do, but like I told him today...I am still grieving through the loss process and how can I go anywhere until I am finished with each stage. I also apologized to him, because he has lost a lot too. We used to go camping and riding the motorcycle, and now I am a high maintainance woman and NOT what he married. I reassured him that I am working hard every day to make progress. Bottom line...He wants some progress. I have been in therapy since January and he wants all of the side effects and all of the other stuff to finally be worth it to everyone. WELL HELLO...it would be nice for me too. We are not that far away from each other in what we want or desire. You guys are either. Your hubby wants some assurance that he will eventually get his wife back. This is the hardest thing that we have had to communicate about, but it is worth it in the end. No I do not have a touchy feeley guy, and yes we have really struggled with this, but there is a light at the end of the tunnel. YOU need to be completely honest with him about how you feel...and where you want to be with him and this disease hand in hand.
Also, I learned something else today...hubby said, "I want to know when you are feeling better or certain things are not hurting...I can't handle all bad."
Sorry...long again...know that you are loved here and vent here. I have a couple that I have shared in detail with. This is the first time I have posted progression to the whole. I am afraid too...judgement is a hard thing for me.
Suzy Home-maker! LOVE THE NAME!
If you don't mind, I have some questions.
Why does he not believe you have RA? Did it come on suddenly or was there some precipitating incident? Is he hanging his hat on something tangible? Or do you think it's just that he doesn't want this diagnosis? Not that any of us want it but...
It's just that your description is almost the exact opposite of my husband and myself. My husband seemed 'resigned' because he'd seen RA up close and personal with his aunt. So I was the one unwilling to believe what the docs were telling me. I was the one running around and willing to try anything to beat this disease. My frenetic and frenzied research lead me to the Roadback and to AP. And while they advocate Minocin for the treatment of AI diseases, my current research backs up a lot of diet/natural treatments out there. (Please, nothing with a paramid scheme LOL). But it's a hard decision to make especially when most of the traditional rheumatologists pooh-pooh it.
I've thought a lot about/lived through a lot of what the spouse of a person diagnosed with one of these diseases must go through. Cordy may have hit the nail on the head. Is he afraid of what the future lies in store for the both of you? Does he have an association with these diseases that he can't get out of his mind? For my husband it was the pain he saw me going thru. It tortured him that he never realized what his aunt lived with. Does that make sense? Is he reliving something?
And Cordy is right - you have to do what is best for you and forget about what the other people in your life want you to do. But is there some middle ground? Some sort of 'learning' you can do so that he feels you are 'fighting'? Can you both sit down and research together? Kind of 'the family that researches together, heals together'. I know any of the cool (hairbrained?!?!?) research I came across I forwarded to my hubby as he was the voice of reason at that time. :-)
Pip
Shelly I am so sorry to hear you have it that tough.
Sorry for interupting your thread this story just got to me.
have a wonderful night.
Thanks for all the info.
I want to get better, but I would like to try the "traditional" approach first. I know that this is a life long disease. I don't think he understands that. He said that he read somewhere that greater than 20% of people go into remission the first year it is diagnosed. He says that I am not trying hard enough. HA easy for him to say.
He also says if it really did hurt that much, why aren't I on stronger pain pill than tramadol and why don't I complain about it. I told him that the doctor would only give me tramadol and I've given birth so pain is all relative.
I just want him to be supportive not a "fixer". He can't fix it even if he yells really really loud.
Hi Suzy, so sorry you have to go through all this. Have your husband read the part about stress making ra worse. I have had lots of "well meaning friends and family" tell me about so and so who tried this and had ra but is now doing cart wheels in her yard. I'm being sarcastic that wasn't really true but lots of people mean well and I just tell them "thanks, but I have a dr that went to school many years to study this disease and I feel more comfortable with his advice". It usualy shuts people up and you don't have to listen to what their miracle drug is. Works for me. I have had this disease for over 2 years and have heard all kinds of cures and suggestions from people. SOme really crazy stuff. They all mean well but after awhile I get tired of hearing it.
My dr explained to me about treating ra. It's like a ladder. You start at the bottom and try one drug, if that doesn't work, you try the next until you find the right mix. You move UP the ladder not down.
Hang in there!
Suzy you got some wonderful advice from our good friends here. Like someone said, you need someone to lean on. It would be ideal if it was your husband, but it sounds like he's not ready yet.
My husband is my biggest supporter. But he goes to all appointments with me and talks to my doctors. He researches and if he hears of a new drug or whatever, he tells me about it and will ask my doctors. He doesn't take over my appointments, but I want him to be involved because he IS involved, for better or for worse.
His worst problem is that he can't make it better for me, and as a man who has always taken such good care of me, this is extremely frustrating for him. But he is by my side every step.(or limp)
Why don't you see if he will go with you and hear what the doctors say? And, I think someone else mentioned The Arthritis Foundation. They are a wealth of information.
You deserve to have someone beside you through this. If nothing else, you can be sure we will be here for you.
Oh, by the way, I think it was very sweet of Darrel to sign in and offer comfort from a man's point of view.
Hope things get better for you.
Gentle hugs,
Nini
Sorry you're going through this. You're not alone. I'm in a similar situation. Not that my husband doesn't believe I have MCTD, he isn't supportive.
I hear, what's the big deal, you don't look sick. Or, I have muscle aches after playing basketball, it's the same. Or how about, When I don't feel well I suck it up. The killer is, he is the biggest whiner when he even has the sniffles. The man can't handle a hang nail.
At one point he actually said " I can't believe this, my life sucks. I'll be forced to work forever because of you and your medical bills".
I was hurt and pissed off. A friend said that he's probably mad that he can't "fix" the situation. He also has never been one to communicate feelings. My buddy pointed out that when I was first really sick and couldn't move, he and I were in Vegas, I was in bed and he spent 7 hours on the phone talking to all the top doctors in Boston trying to get me an appt. ASAP.
After thinking about what she said, I stopped wanting to smother him with the pillow. I still get mad/hurt, etc., but I'm trying to realize that he's mourning a loss too. I definitely can't do what I used to and that effects him too.
Suzy, it is so nice to know that your hubby is an RA expert, next time I am stuck I shall definitely come and ask him the question. Please excuse my sarcasm, but please, this man is obviously in major fix it mode and no he can't fix it by YELLING, though I think he is trying. Does he know STRESS will make your RA worse?Well, I hate to be the bearer of bad news but that was a big part of my separation from my husband. He hated the fact that I was sick. He always blamed me for going to the doctor so much and told me that I was going to get the insurance cancelled.
In the beginning I was in alot of pain everyday and he just didnt understand why he always told me to suck it up too and that I should be happy that I dont have cancer and I should thank god that I still have my arms and legs and is able to see and speak. Because some dont have that gift. I thought in the beginning that he was just a little insensitive and it would pass but as time went by the more abusive he got.
We took a trip once to a place where they had caves and trails but I didnt know this park had all of this. Well, he wanted to walk the caves and the trails and I was so scared to death because I wasnt sure if I could do it or not. So I decided to go down to the caves with him cause I didnt want to complain I told him that I didnt think I could do it but he said that I didnt even try. Well, I tried and I was able to walk down in the caves but it was hell getting back out of them. I could barely move my body up the steps I was sweating so bad and shaking I didnt know what was happening I thought I was about to pass out and fall back into the cave from all of the pain I was enduring. I just kept literally crawling up the steps and as I was doing that I saw all of these elderly people just flying up and down the steps with no problem. My husband said what in the heck is wrong with you look at all these old people moving faster than you and they arent complaining.
I looked at him and I really got scared.
I knew he was getting tired and annoyed with me I knew he would no longer be there for me till death do us part dont think he ever was.
I feel so sorry for you guys when I hear some of these stories like Momofthree just told. Girlfriend; trust me when I say: You are better off without that jackass!
The stress of that sort of behavior is just about the worse thing you could do for yourself. A man like that is not worth having at all. Believe me when I say life as a single woman would be far better than life tied to that man forever. "You're going to cause them to cancel our insurance?" How stupid is that? What a horrible thing to say to you!
I'm on my second marriage and I'll admit my first husband was no real prize; but he was golden compared to some of these stories I hear.
My second husband is super supportive and I believe it makes a HUGE difference in my well-being. No; it hasn't cured my RA.....but it sure makes life much easier to deal with on a daily basis.
I've had RA for 13 years. I've gotten along very well thanks to early and continuious treatment I lead a fairly active life style. It's nothing to be afraid of and the best advice I can give you is to encourage your husband to learn more about RA. Maybe once he realizes it's not going to be a horrible life for everyone maybe he'll do a little better.
I hope so.
Good Luck.
OMG Lovie it's been awhile since Ive talked to you. Im glad you are doing well. I will be better one day if it's the last thing I do. I had to bust up laughing at what you said!!! But you are so right. I just dont know why some spouses just dont get it. I never dreamed a human being could be so insensitive. It's almost like hanging on the edge of a cliff and he is the only one that could save me and he would look down at me and just say "cant you pull yourself up?"
Just hang in there girls I hope your husbands will understand one day.
I am no expert by any means but i will let you ladies know from a guys point of view our spouses are full of sh*t if they think they have any idea how bad we hurt. Me being a guy i have had engine blocks dropped on my arms cutting my arms open, i have had my arm cut with a chain saw and they stitched me back up, and i had both of my legs almost broke from a skydiving accident, and being a country guy i took it in stride and walked off and never shed a tear just like i was taught, But I would take the pain from all of those accidents at the same time if I could avoid a bad flare there is no comparison not even close. And any of you ladies whose husbands are that clueless to the amount of pain you are in just show them my post it would be my pleasure to answer any questions your husbands may have. I have a similur problem with my wife she is always complaining we have to watch what we do now because on a bad day i have real problems walking or gripping anything and we never really did much to begin with she just uses it to get my goat and as stupid as this is it works.Sorry this is so long. Hope everyone has a pain free evening.Hi guys, I am so sorry to hear all these stories, I feel for you all, Darrel, I think that was lovely of you to write and support from the male point of view. I am not saying this to annoy anyone, I just want you to know that not all men are like that, without saying too much, I have got an absolute rock, never complains, always takes care of me and the two boys, I know I am blessed. Don't give up, those of you that are in the early stages, it is a big shock to you and also your partners and a lot of the time it is fear that makes them like they are, they are not used to you not coping and it is not nice to see or realise that it is going to be long term. Believe in yourselves and don't let anyone try and tell you you should be able to do things that you can't. Have a nice day and I hope your pain is well controlled, Janie.Hi all,
Just wanted to add my 2 cents in here. Suzy- I feel bad that you're in this situation with the hubby. It sounds like he may be in denial rather than you. It's hard for you, I'm sure, to feel as though you don't have his support in this situation. It honestly sounds like he's trying desperately to prove that the doctors are wrong. There must be some fear there on his part because he doesn't truly understand what's going on with you. His searching out opinions of complete strangers makes me think that he feels utterly helpless to correct this situation. And when we feel helpless and get desperate, like it sounds he is, we tend to snap out at the people we love the most. Certainly not a good approach on his end especially considering RA gets worse when stress is involved. But unfortunately, I think, he feels so helpless to correct the situation and in turn what happens is he due to that he gets angry with you. Really, I think he's more angry at himself that he can't help you with this. It might be time for him to become more involved with your doctor's visits. It may ease his mind a bit. And as Darrel said it may be easier for him to accept if he sees it in black and white. A heart to heart between you and hubby may be a good idea. I don't know if he's sharing with you the fears he has. In my experience most men won't because they've been raised to be the "strong" one. And as all of us women know, most of them aren't when it comes to illness. Especially their own. LOL Good luck with this. I hope he comes around sooner than later because you need him right now and I have a strong feeling that he needs you more than he'll say.
Hugs,
Steph
When my husband had his heart attack, I freaked out. I had to have people babysit him for 2 months whenever I left the house and I could not leave him alone with the babies because he had significant neurological deficits for some time (moreso than your average husband I still think alot of the problem is "that" word. No one sees an autoimmune disease, all they hear is ARTHRITIS. I say we get rid of that word. People can't understand why you can't handle a little arthritis.