I have Rheumatoid Arthritis and am in sever pain all the time. My husband who was my best friend said I talk about my pain to much and he is tired of hearing about it. He said I should stop talking about it people don't want to hear it. He said I should worry about how other people are feeling when they are around me as it effects them as well. He said I should be more positive.
I hate him! he expects me to stop feeling what Im feeling so that I can worry about everyone elses feelings. He thinks I should act positive so others arent uncomfortable around me. He was my best friend now I don't feel like I have anyone to talk to. I don't even want to be in the same room with him let alone the same house.
Tell him for me he's a jerk. He is supposed to be your support, in sickness and in health, remember those vows? He doesn't. If you need to talk about it he should listen. I bet if he were sick he'd expect you to listen and not just that, help him. My bf and I had a perfect relationship, he listened and supported me and I listened and supported him, all thru his cancer too, right up till he drew his last breath. That's what a loving couple does, not tell someone they talk about pain too much.
Don't hate, he needs pity. Find yourself a group or two, stress management, pain management It can wear on a person who can't relate, but not a spouse. I had the same thing. Best to get into the community, hospice, homeless, anything to help others and get you out of the house for a while. All this is doing is pulling you down. The pain alone is enough. Hang in there.
17 Feb 2015
It sounds like your husband and other people you know may have never had a chronic illness if they are reacting that way. Sometimes they think we look fine on the outside so they don't understand the pain and suffering that goes along with RA. It has helped me to see a psychiatrist or psychologist to discuss my feelings and pain, and to manage meds also to help with side effects from Prednisone like anxiety, depression and mood swings. They can also be a good sounding board and give advise on how to respond to someone like your husband. My psychiatrist has been a tremendous help because sometimes the Rheumatologist is not a good listener either when I tell him about my constant fatigue at every session it goes unacknowledged. You need to let it out, perhaps one of your doctors knows of a good local support group for RA? Just a thought.
You poor girl! I totally understand because I get the same lack of support from MY husband! He has no idea! He is wrong in a lot of ways but he is also right in the intentions behind what he says. People who do not have chronic pain do NOT understand how all encompassing it can be! They dont understand at all, even if they think they do, they really dont. It is something that has to be experienced to be believed. But he is right about other peoples perceptions. Many people are caring individuals but quite honestly, most people dont really want to hear about how bad your pain is. Most people will shy away from someone who is negative and moaning all the time. So I think your husband really IS trying to be your best friend, he just didnt go about it in the most tactful way. We, as chronic pain patients, really do have to be sure that we dont let our pain overcome who we are! It really is best to try to be positive.
Pain can only over come someone who lets it, someone who is negative and tends to wallow in the pain. It takes a strong person to be positive in the face of this kind of pain-I truly get it, believe me, there are days it is very hard for me. But I have learned that sometimes, when people ask me how I am, just to smile and say I am fine. I have learned that there are many people who are worse off than me and there are people who have no idea what pain is (lucky people and I hope they are forever ignorant because I wouldnt wish this on my most hated enemy!) Sometimes when you smile and say you are fine a few times, you begin to realize that you ARE truly fine! This pain is NOT going to get me! I am not going to let it! I dont think that your husband wants you to stop feeling what you feel. Sometimes when we worry about others feelings, we begin to see that our own situation is bad, but not as bad as some other peoples. It is easy to become angry in your situation. Pain can make you into a selfish bitter person only if you let it! Dont let pain take away the person you were before it came-you are going to have to fight to keep her! If you need to talk to another about your pain, choose one of us who are also chronic pain patients because we are the only ones who will truly understand you.
18 Feb 2015
I agree with all of the above. I would like to add to this: I am sorry your husband reacts that way. I am sure he loves you deeply still. Can you find a class for families of chronic pain or chronic disease patients? Also classes in coping where they teach meditation? Benefits of classes: 1) Help him to understand better how to support you constructively and also how he can manage his own stress. 2)Help you with your reactions and behaviors. 3) Find out from other class members about community resources not commonly known. 4) Help him to realize he is not alone in his need to cope with a partner who has chronic stress. 3) A great opportunity for you both to make new friends with whom you can empathically share feelings. 4) You may want to have your close friends attend the class also, if they are willing.
Another thought, find books on the subject of coping with chronic pain, for families as well as yourself. Maybe your husband would be motivated to read them and you could both discuss the topics. Finally, if your marriage is "on the brink" maybe couples counseling may be needed. I sincerely hope he is open to these ideas. Try not to be angry with him. He is struggling too. He needs guidance.
I agree with a lot of the above. Yes, you need to find other outlets as suggested above to help to relieve your feelings about your pain. When people ask me how I'm doing, I always say that I struggle every day with my medical problems. Otherwise people don't understand why I often don't go to parties with my husband, or meet with people for dinners along with my husband. Also it explains why I often can't go to church and do volunteer work for the church like I used to. And sometimes I'll add that's with my migraines and other pain issues. If people want to know more, they can always ask.
Your husband was wrong to say that he was "tired of hearing about it". On another tact, my mother cared deeply about her boyfriend who was in terrible pain with shingles. He lived at her home. But she couldn't take the constant audible crying with pain. I mean that literally. She asked him if he would just go back to his home just 2 days a week to give her a break. He refused and months later, she developed a heart condition and then a stroke. Of course no way to prove that the stress caused it. But she was terribly stressed by it. Just another viewpoint and how terrible others have pain. Yes, pain is terrible to live with. I do feel for you. I live with pain in a number of ways. So I do know. But I only tell my husband when the pain is getting worse, or when I need his help to get my medicine, hand me water and take out my vomit when I'm too sick to do it. But I don't dwell on the details with him. Perhaps I have found a way to deal with it better. I really hope that you will take the suggestions above to deal with yours better.
18 Feb 2015
Hi I too like many others on the site deal with chronic pain, you have some sound advice and I am sure many of us fear that one day our partners will turn away from the one who suffers the chronic pain. You need to have someone to vent all your feelings to other then your partner, otherwise not just your husband your friends will start to fizzle away. The fun person that they first met and wanted to get to know more, is know fun anymore. You have to try and find a way to channel some of the pain else where, think about how you are going to be positive and motivate yourself in sitting down your partner and tell him how you will try to not be as vocal about your pain in front of him.
But also he has to help in trying to find away to help you stear away from thinking about the pain so much. Helping you find someway to take your mind away from what you feel 24/7, if he truly feels love for you steal, which I am sure he does. He will help you find some way to make both your life's worth being together for. Hate is a ugly word, you have to talk and stay a strong women and fight for your right to be happy with life again. Know one can help you, if your not prepared to fight and help yyourself.
27 Feb 2015
I don't want people to be in this kind of pain but I wish there was a way they could be hooked to a monitor to experience what we feel. Maybe then we wouldn't have them ignoring our comments, trying to change the subject etc. If you've never experienced that level of pain it is hard for anyone to understand and sympathize. I have been through what you have and you do need someone to talk to just because you need to vent to help the frustration you feel. It's hard not to talk about your pain when that is YOUR LIFE!!!
28 Feb 2015
I can relate to your problem because I have a similar situation with pain whereas my spouse has no significant pain - and doesn't really want to hear about mine. IMHO, besides taking pain medication, I believe you need someone to talk to. You might consider joining a pain management group or seeing a psychiatrist or psychologist. Any of these choices will offer coping techniques (pain mgmt. is probably best for that) and you'll have one or more people, depending on choice, to vent to. Last but not least: you'll release your mate from some of your burden that he carries. I know that with my spouse if I don't talk about my pain much or at all, her mood becomes better. You may also discover if you stop using your spouse as your only sounding board, that he has a problem or two of his own that he's been withholding and would like to discuss. I did. Best wishes.
People don't get it at all. And I wish I had advice that helped you get people to understand. But there isn't a way I've found out yet. People don't want to believe there is such thing as being in pain for the rest of your life. I know, I can't even believe it myself.
The best you can do is sit down with your husband and tell him about having RA, and how you are very sick of the pain, too. But you would also like support from him as well because a) he is your husband and b) you need help. Living with any kind of arthritis is a daily struggle for everything you once took for granted.
I do hope you can manage to convince him that your pain is real and you deserve to complain about it because no one deserves to be in pain. There are support communities online where you can talk about these issues with people who also have chronic illnesses.
I wish I had a better reply, but I don't know too much about the situation.
Remember you deserve to be listen to and you deserve to take care of yourself before others.
1 Mar 2015
I agree with some of the other comments... I think you need to find another outlet for venting. I know... I have serious heart disease (just recently found out that I have a rare case at 40 that causes incapacitating chest pain daily) that will take my life but I try really hard not to complain to my family. Before I was sick, I had a relative that all they did was complain about how much pain they were in... to everyone who would listen. Honestly, it drove me & everyone else insane. I know that sounds awful but its the truth so I have tried to remember that in my own situation.
I had a friend who passed quickly from cancer & she felt the same way even at the end. She didn't want to be the person everyone remembered as the one who only cared about herself & her problems... and she had bone cancer... probably the most pain of all.
Anyway, I know it's hard & all consuming... try to seek out a support group which will be beneficial for all involved.
2 Mar 2015
I think a man should stand by his wife's side no matter what! If my wife was suffering with pain I would listen & try to help her. He's just looking at it from the other side of the coin now, by saying when people are around all your talking about is you not what's going on with them! Well yea your suffering and no ones listing to your crys for help, like him! Tell him if you don't want to here about my non stop pain then help me!! What are you takeing for pain?
2 Mar 2015
Other members have made a lot of really great suggestions. I hope that you're able to find some other outlets to talk about what you're going through. The pain can really be overwhelming, can't it?
I was wondering: would your user name and question be really obvious to your husband? If it isn't, maybe you could show him this page with the responses you've received or even read some of the replies to him? He might get a better sense of what you're living with on a daily basis and how much his support can help you feel like you have a solid support system.
Take good care!
27 Aug 2015
Hi sheeddy my name is Angela I'm from outback NSW in Australia. I suffer from RA have done since I was 3 now I'm 50 All my life I have been unable to do what other children teenagers adults have been able to do but Sheeddy you know something... even though our husbands, friends or even kids don't know or understand what we are going through ... who cares... no one..ultimately the pain you are feeling will never be known by anyone ... Except someone with RA. Like me I wish my husband understood... but he and many may try to understand..not that they really try... but the pain cannot be explained if it is not felt..I hurt I ache I have pain each and every day, some days more than others. I look great, maybe a bit swollen,a bit over weight with the drugs that I take, humerus injections, methotrexate, steroids god so many drugs.. but I smile, I laugh, I make everyone think my life is terrific...
But Sheddeey I hurt I ache I cry each and every day of my life BUT I love I laugh And I'm thankful for having a husband and children and a family to complain about..I truly understand what your saying But just love the life you have because soon enough We will not have a life to complain about , as is our unfortunate disease..If you feel like this man your husband makes you feel so terrible about yourself... Sheeddy..do something about it speak up..you are a strong woman. .. You have to be... Because You deal with RA xxx
12 Nov 2015
My wife deals with the same thing, RA and fibra. When I read your comment I could really relate. I love my wife but I do get worn out from hearing about her pain everyday several times a day. One reason is because as a guy we just naturally want to fix the problem and when we can't it really bothers us. I do care about her pain but unfortunately I can't take it away. It's a very sad situation for you and my wife and everybody who deals with this. It robs you of your quality of life and those around you too. I can understand both sides of this. For you, the one who is suffering the most it's like you need your husband to bear this burden with you and always be loving and sympathetic to your pain. He is your closest friend, more than that you two became one when y'all married. He needs to realize weather he likes it or not he has got to be your closest ally. He made a commitment to you to be there with you in sickness and health.
It's a mindset you have to get into. It takes learning to be unselfish and putting himself in your shoes. He has to decide if he is going to be there for you or not. What if he was in a terrible accident and you had to take care of him for the rest of his life? I'm sure he wouldn't appreciate you getting annoyed with having to help him everyday. It's not like you chose to go through this. But now from his point of view; I'm sure he feels very badly that you have to suffer so much and would love to take that pain away from you. It's like when one of your kids are sick with the flu. They get special attention and are babied for a while, they eventually get better and life goes back to normal but what if two weeks after getting the flu they get sick again. You think that's a little odd but you go through the same process and put on your nurturing mother attitude and nurse them back to health. You have compassion for him because he is your child and you can't stand to see him suffer. Ok but now they get sick again and then again and again and on and on. You can only be so compassionate for so long. You don't mean to but the truth is you are getting tired of dealing with a sick child. You just want life to get back to normal. I don't know too many people other than maybe Mother Theresa and Jesus that could stay in this mode indefinitely. It's not that your husband doesn't care or love you he just can't stay in that mode forever. The part about other people not wanting to hear how much pain your in is true except for maybe a best friend. People are pretty selfish and judgemental. You might just have to suck it up and say positive things and try to show compassion on someone else's hardship and just try to quit being so vocal about your pain. I mean it's not like talking about it helps. I have heard that medical marijuana is amazing for helping with this condition and it's immediate. Ok, well didn't mean to write a book or come across like I'm an expert on this. I guess I just had a lot in my heart about this
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