Rheumatoid Arthritis

I am 38 mother of 2 and newly diagnosed. My husband's response to my diagnosis has been really kinda weird. The first night he didn't even want to talk or look at me...just kept channel surfing. When I would try to talk about it he just said I was tired and we should talk about it later. I got upset and cried and he got mad. He said I was acting like I was just resigning to life in a wheelchair or something and he wasn't going to go down that path with me. He really is a super nice guy but it's like he just doesn't get it. I want to talk and he wants to act like I'm making a big deal out of nothing. Anyone else deal with this kind of reaction?

I'm sorry for your recent diagnosis, it is a huge shock for friends, family, and loved ones. I actually had just started dating my now husband when I got diagnosed with RA. He was very concerned about the future and that I be in perfect shape and health. It is really hard for them because as woman we are supposed to be the nutured and the healthy one haha so to speak. All i could suggest is letting your husband know in other ways that you are still that woman and still healthy and still going to take care of him. Men have a hard way of showing their emotions and to see you in pain may be very hard on your husband.Just talk to him about it and tellhim how you feel, good luck and I'm sorry if this is sloppy I just now found this site and I am so excited to find peoplelike me! Good luck and message me anytime if you want : )

I am kind of in the same boat. I'm twenty-seven years old and I've had RA since I was fifteen. My fiance does not understand at all. He thinks if I should put in an eight hour days if I'm feeling 'okay' just like everyone else, but he doesn't get that I never feel 'okay'. It is so frustrating. Does anyone have any advice? I tried buying a book for him explaining RA but he has only read one or two chapters.

I am new to the group joined because I had to reply to this one. I am going through the same issue. I was diagnosed with (moderate) RA in November although it was obvious that I have had it for a while. I just don't go to doctors. :P When the diagnosis came back, my husband turned into a complete jerk. Would call me a hypochondriac, accuse me of hurting only when it was convenient for me, and be about as unsupportive as he possibly could be. When I did force him to go to the doctor due to a reaction to Naproxen, he actually went so far as to start talking on the cell phone and even left me sitting in the office waiting for the doctor on my own. I don't know why he is like that, why any of them are so unsupportive. Perhaps it is a lack of understanding because the disease is so... unpredictable? In my case, if you ASK him if he thinks I am faking he will say no and he claims he understands the disease and how it affects me, his attitude and lack of support doesn't appear to match what he says. LOL Even the night that I was diagnosed, he left town for the weekend with friends leaving me alone to deal with a flood of emotions (My grandmother died only a few months prior due to complications of RA at the age of 65, so I was pretty upset) on my own.

I was upset in the beginning and now I am just angry. It's to the point to where I am making a choice of whether having him and the stress of him in my life making matters worse. Perhaps it is the wrong way to look at it, but I sort of feel that abandoning us during our time of need after years of dedication and hard work is wrong. For goodness sake, if they get a common cold we are expected to stop everything and care for them 24/7 until they heal... why shouldn't they offer just a little love and support in return?

I am newly diagnosed with moderate RA (also had it for a while but had a PCP who thought it was everything else!). I am lucky to have a husband who is concerned and supportive. Something to keep in mind with men is that they are 'fixers'. Some men find it very hard to deal with a problem that they can't solve. That doesn't make it right and it doesn't help you deal with your own fears and emotions, but there you go. Sometimes they just can't deal or have to work out their own way to relate to it. I wish you all well am glad to have found this community. Take care

I am newly diagnosed and I also have a husband who is totally unsupportive. I have come to realize that I am more of a liability than a asset. He thinks also that If I can work an eight hour day I should be able to come home and get home stuff done. He refuses to believe I don't really have any good days. Everyday is miserable to some degree. I don't have any words of wisdom for you but I can definately sympathize. I also am at the place where I am debating the value of all the stress I have from my health issue compared to stress I am getting from my husband of 25 years. Somehow the for better or for worse, in sickness and in health didn't mean much to him. Good Luck.
mom2threeinaz

I understand. My husband initially was very sympathetic, after about a week his feelings changed. He also felt that I was resigning to a wheelchair. His dream was that we both grow old and play golf together when we retire. He said that his dream was blown out of the water when he found this out. When I first listened to what he had to say, I was devastated then I realized even though we are the ones with the disease, the people around us are the ones who will carry the burden of taking care of us. It's not easy. My mom has had severe RA for 24 years now and I have been her caretaker since my dad died. So, eventhough we are going through some pain, we need to give them a break as well. Stay well and stress free. I intend to.

This message is for Katrina.

Katrina,

I'm truly sorry that you are getting negative support from the person who should be the closest to you. This must be so painful. You're right... the articles I've been reading states stress can cause flare-ups. Is he this unsupportive in the other things as well? If so, you deserve someone who cares about you, not someone who will keep you down. Take care of yourself and walk away from him if he makes you feel bad. I truly hope that he will come around and show you the support you deserve.

I'm new to the board, but this is the very reason I was reaching out for support.

I've had arthritis problems since I was in 7th grade. In my early 20s it was the absolute worst. Dr after Dr made me feel like a hypochondriac. it wasn't until after the birth of my first child at 28 I was diagnosed. Finally. Proof I wasn't crazy.

My husband was along for the ride for most of this. I was struggling with stiffness and pain when we first met. Going to doctors, trying desperately to find out what was wrong. I've tried every herbal or homeopathic treatment you can imagine. After the birth of our son, my husband had to help me do everything, dress, clean-up, etc. It was an incredibly humbling experience, more so than labor and delivery! Its been almost 2 years since I was actually diagnosed. We've added another child to the mix. A beautiful daughter.

But somewhere along the way, its like he forgot he married someone with a disability. He just flipped a switch and now our lives should be perfectly normal. He said he feels like I'm just taking advantage of him. What?! Really?! I haven't made excuses to get out of 'chores' since I was 15. I also take care of our toddler and infant all day. Not to mention being legitimately run down by the medication.

I don't know how to make it better for him. I love him to pieces and i know from past experience he's over the moon about me.

Does anyone know of a support group for spouses of the disease? I want my family to survive RA even if my joints don't.

to impeechykeen:

You could not have said it better. I started looking for a support group when my fiance became very unsupportive. He says the same thing to, he thinks I'm taking advantage of him. I don't know how we accomplished to make our men feel this way, but it definitely was not intentional. In fact, I find myself doing 'chores' or household things when I really just want to take prednisone and wait for the pain to go away. Anyway, it was really nice to read your post and see that you felt the same as me. I don't know what to do. What are you going to do?

Joy

Hi everyone,

I actually have been dealing with anxiety for a while now due to my arthritis (i was diagnosed when i was 9), in terms of restrictions and obstacles ... and lately I've really been worried about how I am going to be able to handle children, a household and a career. I know it sounds a bit crazy because I'm not actually there yet (I'm in my 20s and in school) but for some reason really worry about this. If anyone has any words of wisdom, it would help

I feel I owe it to my hubby to do a follow up at this point. Things have gotten decidedly better. I think it is true that many men, certainly mine, tend to be "fixers". I was upset cuz he just wasn't able to TALK to me. I think in absence of knowing what to DO he had no earthly idea what to SAY! He has gotten mildly better at listening, but I think hearing my fears makes him exceptionally anxious. I have traditionally been the mover and shaker of the family. The prospect of me being disabled admittedly has very real ramifications for his life. I also have to be fair in acknowledging that.

All that said, what he has been OUTSTANDING at is "doing". He will "do" whatever whenever as long as I remember to ASK. I'm figuring out to leave the "talking" to the girlfriends, and make sure I let him know what he can "do". He loves me and God knows that's not nothin'.

Amyaria that's great! I am so glad that you've found a dynamic that works. I am seeing the toll on my husband, who has been very supportive from minute one. If I am tired (always!) or in pain (more than he knows) he starts talking about what we need to do to make it better. He is trying so hard to take care of me and I love him so much for it, but I also feel guilty, like I'm adding additional stress to his life and jeopardizing his health (he has heart problems). I guess it's just adjusting to it all, huh?

Hi,

I just wanted to respond to your msg to say I am sorry for your diagnosis and that I am sorry about the lack of support from your spouse. Do you have others who can support like family or friends? I think joining a support group was a good thing for you.

It has now been 13 years with RA for me and other secondary conditions that have tacked. My dh lives elsewhere even though we are still married. A huge part was dh was unable to deal with the complications of this illness. This is a progressive illness, very aggressive. I got the illness shortly after the birth of my daughter. She later had developmental problems, recently passed away may 2004 at age 11. I was the caregiver to everyone in the house even though the disease was very aggressive, I had fevers, chills, joint pain that felt like multiple joints were pierced with a fire breathing hand drill. Many days, I had to lie next to my daughter in bed because I was all she had and she was all I had. I had her food, pediasure, meds, etc all on a night stand so I could care for her while I lay in agonizing pain. I had bananas so I could take my meds.

So I been there done that unfortunately. There are a lot of opinions on how to handle this situation. Forget all of the opinions and focus on what do you feel about the situation. In the meantime find articles for him to read about symptoms of RA, take him to your doctor visits, etc. and if all your efforts fail just realize some people really don't take that "in sickness and in health" part of vows seriously as you do. They realize the severity of the condition, they really do. That is what scares them. Everyone will not be up for it. It is a hard road to travel. Find support with counselors, support groups, friends, family, etc. You have to be happy. Crying, being upset, depressed, argumentative, stressed will only bring on the flares. This condition reacts to your emotional state so try to stay in a peaceful place even if it means turning to others for support. Try to be as independent as you can, sometimes pushing thru the pain to care for yourself find a really good doctor your are comfortable with, get your rest when you are flaring, stay hydrated, eat healthy and do some water exercises to stay active and not stress the joints. You need to be able to control the inflammation, get your sleep, exercise, and get eat healthy. All in hopes of controlling stopping or slowing down the disease, so not to depend on others for help so much for help. Take advantage of disability programs to help when you can. Do what you can to be a caregiver to your family on the days when you can, ask for help when you can't, but remember you need to care for you first.

Wishing you the best. Take care of you first.