How many of you feel that your spouse or soulmate understands what you go thru having RA?
Do you feel your spouse or soulmate is caring, compassionate, or even forgiving?
I know we are judged by everyone and everybody, even people with the same disease, but it really is amazing that even someone who is to love you thru sickness and health will critsize you and be so completely un-understanding.
My hubby is very understanding. It didn't happen overnight tho. It took awhile and a couple of RD appointments for it to really sink in. The major problem I had with him was getting him to understand that while RA is my main illness, it also causes so many other things. I have been diagnosed since my 20's and I'm in my late 30's (very late 30's lol) and it probably took him a good 3 years for him to get to where he is with understanding and compassion. I'm not saying that is the timeline for everyone. It may take longer or it may take no time at all for spouses to come to grips with our illness. Depends on the person. Depends on when you are diagnosed. We were young-ish and in a more selfish stage of life so it took us a little longer. Once my husband really came to grips with my RA, it has actually brought us closer.
Our spouses and significant others also go thru a grieving process when we are diagnosed just like we did. We continue thru that process as our disease waxes and wanes. So do our spouses. We have to communicate with them what we are going thru and acknowlede that they are basically going thru the same emotions just without the phyiscal pain that we feel. That lets our spouses know that we are still in tune with them and know that they have feelings about all this also.
I am very lucky to have the support of my family that I do and I never ever take it for granted.
I have a very compassionate hubby but sometimes he just forgets and gets me to doing too many things. When I remind him he feels so bad about it and it just takes time. At first I took him with me to my Dr appts. so he could understand something about these diseases which did help.I'm very fortunate, as my husband is always thinking about my health. He's forever telling me to "take it easy" ...will never allow me to carry a bag of anything while we are out shopping...always telling me to go rest. He puts me before anything and has never let me down in any way. I'm glad my daughter sees his actions and will know what to look for in a husband. He's exactly the kind of man I hope she marries one day.
I think that Rheumatoid arthritis is completely misnamed. Whenever I tell people I have it, many say, oh, I have that too. Yeah, right. They think if they have any joint pain they call it arthritis and they have it too and know how I feel. I am so tired of it!!! They think I am over reacting to my diagnosis and my pain. Just want to scream!
That describes my Husband to a T. He's so, so awesome. I don't know what I'd do without him. He worries about my health more than I do the majority of the time. When we started doing the Humira injections I was totally amazed at how caring and considerate he was. He read everything he could get his hands on about my medication and also went to the doctor with me to learn to give me the injections. My nurse still ask about him every time I go in. "How's that precious Husband of yours doing?"
I was married to someone else though when I was dx'ed and he wasn't quite as considerate. Although he wasn't ever mean to me or totally uncaring; I didn't feel like he was in it with me.
I totally feel like my current husband is in this with me and everything I'm feeling he's right there by my side waiting to help me. It's such a huge comfort knowing no matter what happens he's there for me.
I want a husband like that. It's hard being on your own, but sometimes when the person you live with isn't understanding, it's worse than being alone.
My first husband was like that. I had a lot of tubal infections after my first pregnancy caused by endmetrious. Then, one night, he was out boozing it up with his friends and I had to lift my 4-year old girl to take her to her bed since she'd fallen asleep in the living room. That was a mistake. I pulled out a previous hernia repair and a caused a second hernia on the other side.
I thought it was anothe female problem and he took me to the OB/GYN who said I had to have surgery. Between the OB/GYN and the surgeon's office, he said he wanted a divorce.
There is much more awful things he said and did which is part of the reason I'm not married to him any more. My second husband was about the same. So, I do know how bad some of them can be.
Hopefully you can get through to him about the reality of this and appeal to his love for you. Sometimes, no matter how you try, it's just not possible because you cannot change the other person, only yourself. And it does hurt awful to be treated badly by the person that swore to love you through everything including sickness and health. I feel for you, Joonie.
mamamia, you are so right about the misconception. I tell people that it is an inflammatory process where you're own immune system turns about yourself. It is not the wear and tear of age-related arthritis. It can affect not only your joints but many of your vital organs as well. It is nothing like OA. But you can have OA because RA destroys your bones. And the medications that you take have serious, long-term and sometimes disasterous effects.
Now is that what they mean or not? Practice it in a mirror until you can say it without a pause. Then the next person you meet with that attitude, lay it on them. Unfortunately, we do have to educate people. Here's your sign.
After I seperated from my first husband I was so, so upset and sitting in my friends living room crying. She too had been through a divorce many years before that and she told me "If there's one thing I've learned through all of this it's; I'd rather be alone, than wish I was." Those words have stuck in my mind ever since.
I'm in no way suggesting anyone up and leave their spouse; but while I was single I learned that there is some comfort in just "Being". Not having to worry about how my disease is affecting someone else or feeling guilty about being sick. I was comfortable being alone and not feeling bad about feeling bad. I'm not sure if that makes sense or not; but it was like a burden had been lifted from my shoulders.
Don't get me wrong. I wouldn't trade my "Lovie" for anything. I certainly like this life much better!! lol
My DH is the best. He has fibro so he understands the pain and fatigue that come out of nowhere really well.
He is human though. As I have declined in physical ability at 2 or 3 times the rate he has, he doesn't understand always that I can't do whatever now and am unlikely to ever be that able again.
We had a wingding about a flight of stairs at a mall 3 years ago, I balked and insisted on an elevator or escalator, even though the stairs were right in front of us. He thought I was being lazy.
Having said that, he does seem to being coming around somewhat. I'm hoping with time he will come to understand what I am going through.
Cathy, I am in about the same boat as you. My hubby just doesn't get it or want to research it. I guess I have added RA to my list of anxiety and asthma. I wish he would try and understand. I have always had a really high pain tolerance. But, I can't stand this! I am pretty sure he thinks I am being a whiner. It is so frustrating. I want to take him to a rheumy appt. but he works an hour away and he doesn't like taking time off. I am going to insist though.
We can relate together! Laura
Print out pages about Rheumatoid Arthritis and post them on the fridge, etc. Don't know if it will actually help, but it sends a strong messge that you want him to get educated. It is so hard when the one you love doesn't get it. I lost two boyfriends during this process of living with RA. I'm not so quick to jump out there again. It is quite a relief that I don't have someone in the house always doubting me.
My daughter is very supportive because she has FM and other problems. I'm glad to come home to her after all the trials of facing doctors and social workers. She gives me that sense of reality that we so need.
Sorry Deanna, but that would mean he would have to actually READ something. Not likely. Drives me nuts!!!My husband now took it upon himself to do some research and find out what it was all about himself. All he knew was the typical getting old type of arthritis. He learned how RA affects me, treatment options and the possible future I'm facing and the possible future he'd be facing as my husband. He promised me we'd face my uncertain future together. I guess you could say I was so surprised and touched that he cared enough to bother I've been hooked ever since!
I think MAYBE it's been easier for my husband this time to deal with all this because he went into this marriage knowing full well what I live with everyday and knowing what our future together could be like. My first husband was caught off guard when he learned that his young wife had been dx'ed with an illness that was changing their entire life. Not that; that makes it right.....but I can sort of understand that.
It's an entirelly different story when a person agrees to go into things knowing all the facts and I guess another story when they are struck with the facts at a later date.
BUT; I pledged "In sickness and in Health" both times. But we all know that vows are just vows. That doesn't make it easy.
My DH is very considerate and caring, and he even does the cooking, cleaning, and shopping, which is such an amazing help for me. He does as much as he can because he likes taking care of me. However he is very sensitive and when he gets mad at me, that all goes out the window (and then some) and I feel very alone.
As far as understanding my diseases, he gets them on a general level, and will listen to me talk about the specifics, but he understands them as much as I understand baseball (I know how the game works, but not the real details...the rules, the teams, the players, the stats, the history, etc). I did get him to read a little of an FM book and a great book on having a chronically ill spouse (Beyond Chaos by Gregg Piburn...great read) but he never finished.
I'm getting to the point where I have a hard time remembering everything to talk to my doctors about (even with notes) and I could really use someone to take charge, but that's just not in his skill set.
Overall though, I much prefer having a husband who's more caring and less knowledgeable. My first husband was a little more knowledgeable, but was never around (workaholic).
I wholeheartedly agree with the other posters that actually being on your own is better than being alone in a relationship.
Lovie, you must have posted while I was composing. I think I had the same experience...first husband caught off guard, second husband understood what he was in for (to an extent, I didn't have the RA yet, but I had the other stuff).I have more to say... but hubby just got home and wants to go somewhere, so I will post more on it later tonight.
I just wanted to say before I FORGOT... Deanna said to print some RA info out and put it on the refridge. Well... that reminded me of what my mommy does... she is in to her religion and she writes on pieces of paper prayers or verses and tapes them to the wall in her bathroom right in front of the toilet... so when you are using it you have no other choice but to read the little notes
How about trying that, and then every week change the RA facts out with new ones and eventually they will be knowlegable on RA??
That's a good idea. Make them banner type sayings like "RA kills, shortening the lives of it's victims an average of 12 years."
I'm sure others could come up with some good ones. Maybe make that a separate post.
Ok... Mine did not understand my JRA for a long time. As when I met him I was in teenage remission and was taking the occasional lodine and I did not tell him until we were together for a year. After having daughter I had came out of remission and my JRA had come back, but not as bad as it did after having son. I was slowly going down hill after having daughter. I had chronic fatigue and would sleep my days and nights away... and I had to gumption to do anything, I was swelling and in some pain, but enough pain for me to seek medicial attention.
My hubby had never seen me that way and thought I was just being lazy and not wanting to do housework and sleep all the time. It resulted into many of fights the first 4 years of our marriage, and then when I started seeing a different RD, and he would go to appt with me, and heard the what the meds I was going to be on were what cancer patients took and all that jazz, it kinda hit him, but still he thought I would get better.
Then after having son, he got to see just how bad JRA could affect me. And it kinda softened him to the point of him seeing I am not lazy and I am doing the best I can. Even now and then I will ask him to do something for me and he will tell me to do it myself and he will watch me try and if I cannot do it he will eventually take over. Then there are times he seems like he just forgets that I might not be doing good as I was doing better the days before and he will call me lazy, and then by the next day he will realize I was starting back to not doing good, and start helping me out a little more.
I have a hard time communitcating with people... hubby, kids, doctors, and just about everyone else. My problems are probably from lack of communication or too little of communication. My mom use to tell me "I cannot read your mind!"
He's said one too many times, "oh, I have pain in my knees from playing basketball but I just suck it up". OMG, he has nothing wrong with him. I've also heard from many people (already) the "oh I have arthritis too". Pisses me off. This is not "just arthritis".....
My husband is a blessing from God. He is so understanding nd sometimes it is me who is hard on myself because I feel guilty..he is so understanding...and doesnt deserve this RA of mine ...neither do any of us here.My husband is also a blessing from God. I was fortunate because when I was first diagnosed his boss's sister (who also has RA) talked to him (without my knowledge) and told him all about the disease and how much help I would need. I don't know what she said but it must have been good.
He works HARD as a manager of a auto glass repair shop. He comes home and does all the laundry because the washer & dryer are downstairs and he knows I don't do stairs well. If the dishes aren't done.....he does them. He always greets me with a kiss and asks how my day was and what he can do for me. Whatever I need done he does for me.
It was really hard to tell him at first because I always used to do it all . I wanted to ....I like to be the domestic goddess and have the house clean and dinner done. I have found that your family and friends really want to help but don't know what to say or do.
BTW....we will celebrate our 20th anniversary March 7th.
But you shouldn't feel guilty. Not really. It's not like you went out shopping and picked RA. It's not like you were drinking, gambling or shooting up drugs. Those might be reasons to feel guilty. This is a disease that picked you and not the other way around.
Love should transcend illness. But in our society there is so much emphasis on beautiful, attractive, overacheivers that a lot of important values are thrown out the windows.
There is value in caring for someone else. I get great joy in being there for my daughter. When she is really sick and suffering, I find joy in just being at her side. Helping others that are sick gives something to the person as well. They start to understand their true value as a human being. It's a lesson we all need to learn.
Compassion is a gift, one that you can give others and one that you can help others learn to give. They are going to be better people for helping you. They are going to feel better about themselves once they stop feeling sorry for themselves. Yes, they are grieving and we need to acknowledge what they have lost. They have been cheated out of the life that they wanted to. You don't seem like the same person you were. And, you're not. But facing this illness does have the capacity to change you into a wonderful person. Look at all the great people on this forum. I cannot even name all the people that have helped me. It brings me joy when I can see I'm helped someone else.
The best thing you can do for your family is to help them in their journey to accept what is happening and that it is okay to step up to the plate. They are going to become giants in the realm of humanity. You were given to them as a means to help them reach that new expanse.
I think my husband and kids totally understand as best as they can. He's very considerate - though sometimes he needs a gentle reminder that I am different now. My sisters are not the same. They are all very selfish and inconsiderate women. Matter of fact, none of them have EVER called me just to say "Hey, how are you feeling lately?". The only times I hear from them is when they need something from me. It's hurtful because if any of them ever has a crisis I'm right there for them. With my dad being ill right now, it's never been more obvious to me. They call when they need something and almost verbally back me into a corner to give in. Never say "thanks" or anything. I'm waiting for my dad to get over his health crisis and I will certainly cut off the "gravy train" for my sisters.I understand your feelings exactly.