I am very sorry you are going through such a difficult time -- it is bad enough to have a disease that is painful and may interfere with sleep and other aspects of your life. But to have a spouse/family member who is not only not supportive, but downright mean (sorry - my opinion) is just adding fuel to the fire.

Can you set aside some time to discuss with him (not in the middle of the night when you are both tired) about your issues and need for help around the house? Has he been to a rheum visit with you to hear about the disease? Do you have children or others who may better listen to your needs for help?

I guess despite some flaws (who doesn't have them?) I am fortunate to have a supportive and understanding husband. He will either do more to help out, or at least not complain about things undone.

I hope things get better for you.

What if you suggested couples/marriage counseling?

No one asks for a chronic disease. When I was on oral MTX I was nauseous and losing hair. I will never forget my FORMER husband saying: "I can handle you being fat (which I never was), but I can't handle you being bald!" It was the quintessential act of betrayal and lack of support! Would he had said that if I was on chemo for cancer???

It's not fair. None of it. We didn't ask for this disease and we didn't ask for non-supportive husbands. Which is worse, a non-supportive husband or none? I wish I had some great philosophical answer but I have not even a simple reply. Everything in life, I find. has pros and cons. For me, there is a huge freedom from years of emotional abuse. I feel like someone released from prison, yet I regret what the divorce did to my kids. Financially, I have lost much, but no matter how tiny my condo is it is MINE! I wake up happy every morning! I have many friends who love and SUPPORT me and would never say anything as cruel as he did!

On a practical note: I take Benadryl for sleep. It's non-habit forming and is the ingredient in all the "night time" aspirin/Tylenol products.

I am so very sorry you are having such a hard time. From my own experience I had nearly a year of nights with such severe pain that I couldn't sleep, or just plain insomnia. I often occupied our spare bedroom so as not to disturb my husband.I did not realize how sleep deprived I was going to work on 3 hrs of sleep, I cried ALOT, I ate uncontrollably trying to stay awake at work. I recomendations seeing your doc.

Thank you all. Yes we started marriage counseling but he didn't want to go again after 2 sessions because he was corrected by the counselor after he yelled "shut up" at me. Now he's embarrassed at his own actions and won't return. We also just finishedca 4 week marriage class at our church. He is emotionally and verbally abusive, not to mention unsupoortive. It just kills me that he can treat his friends, colleagues and even the kids on his baseball team that he coaches with positive reinforcement and kind supportive words but intentionally chooses to treat me with such malice I rent to hurt me. I know he is capable, yet chooses to retort to these types of behavior. I'm going back to the counselor on my own to try and sort out my next moves. I just wish he'd believe that I do have legitimate issues (lipus, RA and type 1 diabetes and on an insulin pump to boot) and I'm not faking nor do I choose a life of pain, swellin, insomnia, and all the other issues that quite frankly I have no control over.

Julie, I'm feeling your pain. I think RA might be a mirror that makes us look at things we might have not otherwise paid attention to. In my case, the lack of overall support wasn't an issue because I didn't necessarily NEED a lot of support.........but now I do, and it's not there and that's raising a lot of questions for me. Good for you for trying the course at your church, and please consider getting counselling on your own even if he refuses to go.

Oh Julie - I can relate and am so so sorry. I have no answers. I try my very best to just have no expectations whatsoever of my spouse. Yes, it's hard, and it means doing much more on my own than I am sometimes able (or accepting that it just doesn't get done), but it is better than constantly being resentful and disappointed and angry that he does not step up. Everyone's situation is different - this is just how I am able to continue to live my life. That, and I have a best friend who lets me vent once a week - just to "get it all out" - over a glass of wine.

let me know how I can hold you up. I have lived alone since divorcing (17 years) and had the disease a wicked long time. I do not have a spouse to let me down. sometimes my boss(es) would get me down in terms of ignoring accommodations but that's work not home. I can get on the pity pot about not having a back up though and wonder if I am going to fall flat on my face. I find that focusing on what i have accomplished alone with the disease gives me tremendous satisfaction.

Remember this: it is crazy-making to seek approval from folks that invalidate your reality. The only way to get off the crazy-making cycle is to do what susie states above (appreciate your independence and acceptance of what is falling into the great pile of not done). I find my best buddy who also (just happens) to have RA is like an enormous help. I read her mind. she reads my mind. do you have a good network of sisters or best buds?

you might want your OWN separate counselor that is NOT the church's (no comment) or your duo marital counselor?

practice acts of kindness to yourself - really. Use your healing tool kit (like for me it's ice, heat, elevation, exercise, hot water pool, friends, prepared foods, more friends, laughter, giving chores the finger) independently without asking for permission to heal. go ahead and just make your healing acts of kindness to yourself how you cope. buy pretty canes. decorate your wrist wraps. get a handicap placard withOUT consulting with the general(s) in the household no less the misogynistic one.

hugs

depot

Julie, I do understand what you mean about not being able to sleep the pain is so bad. Last night, I was up crying because my hands and wrists were so bad! They felt like little razor blades were inside them, cutting me up. And I am trying to cut down on pain killers, so I did not take any. This morning, I realized that was a mistake.

Several things have helped my marriage. For years it was separate beds. Now, a king sized bed is pretty close, if he is on his side. Plus, if I really can't sleep, we have a spare bedroom, and although it is up some stairs, it is good to go there and then I don't wake him up. Not that much wakes him up, anyway.

But, while I totally believe and understand you are in terrible and chronic pain, what I am reading between the lines is more than just an unsupportive husband. I went through that for the first 10 years of RA. The thing that hit my husband was when I had my foot reconstructed, and he looked at the X-rays. I'm not sure why the twisted, deformed foot didn't convince him, but maybe have a doctor explain the procedures he had done on my foot helped?

My point is that you are living in an abusive marriage. If he is yelling at you at marriage counselling, and won't go back because he is embarrassed he got called on it, then, regardless of your health, you need to make some decisions. Do you want to put up with this kind of abuse till one of you dies? Please don't go making excuses for him, saying that sometimes he is nice. That is called the Cycle of Abuse, and he is just smashing you around (verbally, but it could escalate!) and then reeling you back in. If that rings any bells with you, you need to read this link, and get in contact with an agency to help you get free from this.

http://www.hiddenhurt.co.uk/cycle_of_abuse.html

Now, before you say, you want to work things out in your church, if you are in a complimentarian church, they will want to keep the status quo. That means, your husband is the man ("be a bit nicer to her.") and you are the little lady. ("What do you mean he isn't nice to you, it is your fault for not being a better wife?") Complimentarian is all about "roles" a word that is not even found in the Bible.

Now, before everyone jumps on me, I am an ordained pastor, and I have courses in counselling and Domestic Violence. I simply no longer have patience with un-Christian churches who allow men this authoritarian verbal battering.

And if I have misread what you wrote, I apologize. A book written by a pastor you might want to read is "A Cry for Justice." It was recommended reading, and I couldn't get a hard copy, I had to download it on Kindle and it was badly formatted. But, a good read, in spite of that.

Now, back to our regularly scheduled RA issues.