Rheumatoid Arthritis

I havd had problems getting my spouse to understand the sypmotoms and pain that I suffer with my RA. I would appreciate any suggestions or advice on helping him to understand that I am not faking or making this up, because sometimes I believe he thinks I am just faking mmy pain and my inabildsty to do some of the ghings that "normal' people' can do. Any help would be greatly appreciated.

I use to feel like nobody knows what im going thourgh some times I still do but what i've learn is it not about them its about you and how you are feeling ,what you are able to do that day i've also printed up anything I could find on Rheumatoid Arthris I left it all over the house for everyone to read so that they can learn about it the same way I had to because alot of times when we don't understand something its because we don't know enough about it .I hope I helped
GOOD LUCK

I too have had the hardest time getting my husband to understand the pain, and I know I've been unfair to him for not fully understanding. I sometimes feel he too thinks I am faking or being dishonest with how much it hurts and how I can't do certain "normal" things I use to be able to do. The hardest part has been when I am balling my eyes out and then 10 min later he see's me "dealing" with it and he wonders why I can't just "deal" with it all the time. It's so frustrating! I feel like I am going through this alone even though I have had tremendous help from him (well somedays) and from my mom. What can I say to him that will give him more insight on what I am feeling? I can't find the words to describe the pain, how about you?

Ok, I tried to start a new discussion on this a few days ago and no response. So! I'll try to hop on to this older discussion and see if anyone is watching here. I just really need to know that we aren't the only four people in the world whose spouses are looking at us like we're just hypochondriac drama queens. Yeah arthritis, no big deal right? Everybody gets a little arthritis here and there. No big, deal! OMG!! Sometimes I just want to talk about practical things like maybe we shouldn't get that 90lb dog we were thinking about in lieu of a smaller one. Maybe we can hire a neighbor kid to help me with the garden heavy lifting so I can still do the stuff I enjoy. I'm not even saying it all depressed or anything but just....yeah we maybe need to think about this stuff. His perception is I'm being all morose and he should assist me by not allowing me to talk that way! Sometimes I feel like he is having a way harder time dealing with this than I am and dang it! I would really rather not have to assist him in his emotional state on this one cuz I would really appreciate some assistance on mine for a change! Someone please give me an idea on how long I should reasonably expect "spousal denial" to last, cuz I really don't want to have to be the "strong one" all the time. Maybe this is just what I get for being so stinkin' capable all these years. HELP!! *pant...pant*

To you all...first of all I really feel for each of you. I was married for 15 yrs and divorced just as I started to get my symptons. I swear if I had still been with him, this would have been another problem in our marriage. Most men and some women have a tendency of taking charge in their marriage...of doing it ALL. Well, then when a disease like this strikes the one that does it ALL, they wonder what is going on. Your too young for arthritis. But, if they were any kind of loving spouse, they would hop on the internet, go to the library and grab some medical books and find out all they could about it. So that they could understand the up and downs and trials of these diseases. Even though I am no longer married, I still struggle with getting my own kids to sometimes understand my down times, as well as my own BOSS! That is a struggle too. I sometimes have to have my doctor step in, or I would maybe lose my job. I know its difficult, but you will probably have to be the one that gets them the information. Sit down with them and tell them, you don't like what is happening to yourself, nor do you completley understand it. But, if they could be more supportive, it would help you emotionally.

Good luck everyone.

I came accross this link that someone had sent to me that may help to pass along to your spouses or relatives and friends. It is about a person dealing with lupus, but the concept is there for any disease. It is called "Spoons".

Here is the link:
http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

There are so many times that I feel so alone in this disease. My husband went on a couple of appointments in the beginning but really has not been there. If I complain about something hurting or fatigue I just get are you due for your meds. I hate that so much! If I need help cleaning around the house he orders the kids around to help me. I think he gets it but I need someone to cry or scream too or just listen to me (not fix it) and I feel that even
my sisters make a call to me once a month to check on me but what is that. I just keep it to myself and say I feel fine. Fake it until you make it! I have no answer for you. I have try to leave stuff laying around the house to read and it just sit there.

I can not find the words to describe how happy I am to have find ya'll. I was diagnosed January 2007 with RA. 4 months before my DX I moved to Provo, Utah for school and had to go through the pain, doctor's appointments, and nasty side effects with no family and "new" friends around. I have never felt so alone. Does anybody else constantly feel that they do nothing but WHINE AND COMPLAIN. My husband is very patient with me and wants to get the best treatment, but I can tell when I wake up and my hands are so swollen I can't bend my fingers, that it is going to be one of those days where he opens the bottle water and mayonaise jar while I begin to feel more and more worthless in life. I am only 22 and this is so hard on me! I have been looking for a support group because lately it has been too hard. I feel like nobody understands the physical PAIN RA casuses and the mental insecurities in brings. I looked at the can opener today and tried so hard to conquer it (my husband bless his heart, was at work) and it had to of taken 15 minutes for me to open the can of sauce. I am very lucky to have a loving supportive husband, but I still feel so mentally and physically warn out from this disease.
Are there any treatments that won't cause harm to pregnancy (like methotrexate)? Or any out there that don't cause us to gain weight or our face to break out (like prednisone did for me)? I am switching treatments from Remicade to something else, something BETTER I hope. Thanks for reading this, I don't feel so alone in the pain anymore after finding this site : )

My background: diagnosed with RA at 16, I'm now over 60. Originally told never be able to hold a full time job, will be in a wheel chair by 30. I have had flareups - many - over the years, but few in last 15 years or so. Why? I did LOTS of research developed my own plan - vegetarian diet extremely important. Rest when tired. Manage stress - if someone or a situation stresses you, cannot be controlled, toss it/them out. I have worked all my life, got BA and MA in psychology, was child protective social worker, now doing volunteer work. Do NOT take drugs! I am in minor flareup now, dealing with it. Cause? Had to move to new state, left family, friends, work - very lonely. Hard to manage this stress!

My wife has was diagnosed with JRA at age 11 and she is now going on 37. My wife had both of her wrists fused at age 23 a few years later she had a joint replacement on one of her fingers then 4 years ago she had bone spurs removed on her feet. We have been married for 13 years and I would do it all over again and again she is everything to me. My wife had been let down by her family and every Dr. that came along at a young age so she put up this wall that read no one understands my pain because if they did they would help me. I am the kind of guy that can do or fix just about anything I am also what people call a pleaser, I like to make people happy by fixing things or making them look better. Well that creates a big problem because there is nothing I can do to fix my wife believe me if there was I would of done it a long time ago in fact I would give or do anything to give her even just one day with no pain. I used to tell her I felt her pain or that i know how she feels but really to her I was full of shit and could never feel her pain and after 13 years I am feeling her pain because nothing can hurt more than to see the person you love more than anything in this world suffer day after day and to see the disapointment in her eyes and spirit everytime the Dr.'s with there new drugs fail her. I will tell you this never for one moment have I ever thought that my wife was faking the her pain especially when you hear her cry herself to sleep at night. Look I can go on and on but the fact is DO NOT put up a wall he may not feel your physical pain but it is killing him inside that he can't do anything to physically help you because thats how men think. So take the time and make a list or tell him ways that he can help you! We men are not mind readers!! Thanks for you time.

Thanks so much GoodKarma for giving the flip side point of view. Things at my house have improved considerably. I think I just needed to give him a little space too. I don't think at first he even knew what RA was so couldn't figure out why I was freakin' out. When he learned more things got better, but he isn't a talker. Like many men he is a doer and as you say he just can't fix this. With out knowing how to fix he just didn't even know what to SAY! I have likewise gotten much better at being specific about my needs. When he knows what to "do" he has absolutely no problem doing without hesitation or complaint. I'm coming to terms that this is something that is going to effect all of us and each one will have to find their own way of coming to terms. Your wife, by the way, sounds very lucky to have you!

Hi all
I do understand how you feel it took quiet a while for my Husband to get it, He goes with my to every Doctors appointments, I don't know what got him to understand. However the rest of my family doesn't care to get it. Yes it bugs me but if I let it bug me too much then I get too stressed, So I have to put down limits and they either get it or they don't it doesn't mean it doesn't hurt me when your adult kids and your Mother don't care to get it but I can't control them so, I can only do what I can control not what I can't.
Gin

I know this post is a little late but I am new to this website. However, I am not new to RA and the struggles.
My partner was recently very honest with me when I asked through tears of pain, depression and anxiety, "how can I make you understand?" She looked at me, and we wept together.. She told me it only seems like she doesn't care or understand because she is helpless to help me. Nothing she can do or say can make it go away. She knows that when I am in pain she cannot hold me and during long flare-ups we cannot walk holding hands or spoon in bed. All she can do is detach herself for the moment to keep from breaking down and being of no use to me. She has explained that the blank stare is not from disbelieve but from helplessness as if she is watching me get hit by a car and cannot move at the speed of light to help me.
I do appreciate her honesty and appreciate her kiss more now than ever. I have been in a flare up for several months now and her kiss, smile and her soft half bodied hug is all i have.
Talk with your spouse and ask if he feels the same way.