It is really difficult for our partners to deal with these illnesses and sometimes I think we lose sight of that because we are experiencing the illnesses and dealing with so much ourselves. I'd love to hear different ways people have found to help their partners understand and cope.
Edited: PS....I love the "Spoon Theory" and have found it helpful.
Peace & Love....Neasy
A lot of talking. I have found that a lot of frustration that your partner is the same frustrations that you are feeling. And that they (like us) do not think this is normal to be feeling this way. So talking about with your partner what is frustrating for them and mirroring back to them what they are feeling so that they know you are hearing them and trying to understand them. That is a huge relief for your partner.
Another huge frustration that I have seen just talking with people and talking with my own spouse is that they have the inability to make this ok. They can not stop the pain. For guys...this is just killer to sit there and see their wives in that much pain. Constant reassurance on my part to my husband that I will be ok that it is just one of those days is what seems to calm him. Also reassurance that not am I, but our doctors are doing everything they possibly can to get this under control so I am not in pain and I can return to as "normal" of a life as possible.
Going over the stages of grief helped also for me. It has been found that not only people grieve for the loss of a loved one...but we also grieve a chronic illness. And our partners do also.
I agree it is difficult for our partners to understand. Heck, it difficult for us to understand! I happen to be married to the kindest, loving and patient man on earth. We have 6 kids together so it helps that he is patientVery well put as always gramma. My partner and I just had an RA discussion yesterday and he told me how frustrating it is for him to watch me when I am in so much pain and there is absolutely nothing he can do. He said two things that really touched my heart.
1) When you can't walk all I want to do is cut off my legs and give them to you.
2) I wish I could cut my life in half just so that you wouldn't be sick or hurt anymore.
You are so right...they are just as frustrated as we are and they do suffer right along with us.
Peace & Love...Neasy
awwww those are such sweet things your hubby said....Awwww how sweet is that!!! I am also married to a wonderfully patient man for 15 years. Without him...I do not know where I would be. We also have had no money but we had each other and somehow we have always managed to get by. He is not perfect by any means (and omg neither am I lol) and has said a couple of things that have upset me that he has apologized for and wished like heck he could take back. Even the most wonderfully patient spouse can come to their breaking point with all of this and just snap once in a while.
My husband is now experiencing some chronic pain and it has been very difficult for him to deal with. He has been a relatively healthy person up until now. But as I have told and keep telling him...I understand what he is going thru and he has to drop his stubborn I can take care of myself stuff and let me help him now that I am doing better and I can. He said to me tonight he feels guilty asking me for help because he knows I am not 100% and still dealing with some pain and he doesn't want me in any more pain because of him. I told him that if I didn't think I could help him I wouldn't because I know my limitations. Or at least I think I do lol. He finally relented and I actually was able to draw him a nice hot relaxing bath and he let me rub his back a little bit. He is coming to grips with turning 44 this year...not looking or acting like he is 44 (if you knew my hubby you would understand...he still gets carded in bars sometimes lol...BRAT!!) and having an extremely physically demanding job is catching up with him. So in my extremely long winded way of saying things (I'm italian lol), it helps our partners to understand and cope with this ridiculous disease if we also allow them to help us when we KNOW we need the help. Otherwise we can unintentionally add to frustration. I understand we want to be as independent and do things for ourselves as long as we possibly can, but sometimes, we just gotta have help and let them do it for us.
Neasy....excellent thread and excellent comments by everyone!!!
AWWWWWWWWW I almost didn't read this thread, because I'm not married, and my other half has a chronic illness so we're pretty good on stuff.....but MAN I'm glad that I did. THOSE WERE THE SWEETEST WORDS!! You have a stellar hubby!!We spend everyday together and are each others best friend. Liz, like your husband he's starting to feel his age (64) and has many more aches and pains. I try and be sympathetic and helpful. It works both ways. Lindy
Great words from everyone.
I'd like to add that it helps when I tell my hubby about the things he does that are helping me...rubbing my shoulder, helping me do things, etc...so that he knows that he is doing something, even if he can't "fix it". Sometimes our partners really don't know how to help us, and we just need to tell them.
I've found that hubby gets confused about how bad I'm doing on a particular day because every day is a "bad day". So I try to remember to explain to him in terms of what I can and cannot do that day rather than how bad I feel.
I think it's important to acknowledge to your partner that you understand how difficult it is to stand by and watch and let them know how much it means to you that they are there for you.
Sometimes I just need acknowledgement that I'm in pain and that someone's there to hear me...here's an exchange from last night:
"my jaw is hurting me so bad"
he said something about the baseball game
"honey, my jaw is hurting me so bad"
"ok"
"my jaw is hurting me so bad"
"I'm sorry you're hurting honey"
and once he got the picture, then I was quiet.
I'd also like to recommend a great book that I've mentioned on here before...Beyond Chaos: One Man's Journey Alongside His Chronically Ill Wife by Gregg Piburn. He stresses the importance of being honest about both people's feelings. It's been awhile since I've read it and it's probably time to bring it out again.
What wonderful husbands we all have Mine too deserves a sainthood, he has been great from the start but I had an advantage. My hubby used to work on oil rigs as a rigging contracts manager and had an accident quite a while ago that made him confined to bed and then to a chair for almost two years, I was still working then and my kids were really little so it was very hard to cope with it all on my own but like we do, I just got on with it. When hubby got better, he couldnt go back to the oil rigs ( thank goodness) and he now works as a manager for a mechanical company. He understands how frustrated I become when i cant do the things i want to do, he helps with everything around the house and luckily the kids are a lot older now. It truly has become "for better or for worse", in sickness and in health!! There are a lot of men/women out there who are in denial about their partners illness more so than their partner. They become self absorbed as well and think "what about me". these men/women need to be well informed on every aspect of the illness so they can help their partner, because help and understanding brings you closer together. When I was first diagnosed, about March of '06, my husband did some research on his computer at work and called me up frantically and said "Honey, I've been reading up on RA, this isn't good!". I sort of laughed and said "Yeah, no kidding". He then began treating me as if I were 9 months pregnant again (perish that thought!) by doing everything short of wrapping me in bubble wrap to protect me. I slowly had to remind him that I won't break, and I will definitely call him to help me if neccessary but I'm in this for the long haul and i didn't want to wear HIM out!I am sorry for bringing everyone down. I am very happy for those that have good marriages and relationships.
Love Sandra
(((((hugs))))) Trinity. I am so sorry that you are going thru this with your husband. I always hope that partners will understand and help us thru this. Please understand that this is not your fault. It is his own insecurities that he is acting this way. Sometimes men have a hard time expressing what is really going in their heads. Weird I know...that is just the way they are wired. The real issue is not your weight. It is most likely that he is afraid of the changes that have to be made in your lifestyle and afraid of what the future holds. From the way you were talking in your post...it seems there are going to be some rather large changes that he is going to have to face whether he likes it or not.
You need to do whatever it is you think is best for you and your precious baby girl. No matter what that is we will be here to support you.
You are not a trophy. You are a human being with real feelings. You are way more than what you weigh or whether or not you can move around. You are not something that is to be set on a shelf and admired.
Sandra- I'm kinda with you. As I'm reading how great all these husbands are, I'm thinking, " I want one of them!" Not that mine is awful....he just TOTALLY doesn't get it. And when I do try and tell him something, like about my Dr appts- etc. he just says, " Just tell me what I need to do." AAAggghhh!! I need you to listen to me--but I know he still won't get it. I'm sure that he thinks it's all in my head. His mother is also chronically ill ( I'm pretty sure she has MS, and some other things too?) and I'm sure he's afraid I'm going to end up like she is. In fact he's referred to me as "Mom" before, which is very hurtful. And I used to think his mother was looney and over medicated, etc....but have come to the understanding that she's just ill. So I do sympathize with her more now....
anyway...I'm so happy for those of you who have an awesome support system!!
Hey, my H isn't perfect, far from it! I have to pick up his clothes from everywhere, he's absentminded, sometimes rude to my friends, does't do much housework unless asked. Not perfect! I hear ya Honey!!!! Mine is great but way far from perfect!! I have the same issues with mine as you do with yours lol. I have a basket for him that is especially for his icky work uniforms and think the uniforms can land in it??? Um no. Housework??? HAHAHAHAHA!!! 3 weeks now I have been asking to get my balcony cleaned up lol. But hey,..mine at least puts the seat down so I don't fall in at 3am lol. my hubby is a bit of a jeckyl and hyde also ( our surname is Hyde ) he is very supportive until he is sick or in pain and then its like my pain is worse than yours. MEN you cant live with them and you cant live without them .