I am 31 years old and was diagnosed with RA about 5 months ago. I had the symptoms for nearly a year before I got tested for it. It's somewhat controlled, but I am also an opiate addict. I haven't abused opiates in over a year now, but it makes for controlling the pain a lot more difficult obviously. I have tried NSAIDs and what pain they do relieve, well, I just push through the rest of it. I've had 6 surgeries on my ankle/leg that I injured nearly 11 years ago, I have 2 slipped discs in my back, had my gallbladder removed and also have bursitis in my hips...Yep, I'm a mess at the old age of 31..lol..But I push through it, I'm a fighter. I also have a son who will be 3 in May. He's the reason I get up and get moving. Without him I'd probably just lay in bed all day.
So here's my current problem: my husband. We've been together over 10 years now, but he is so unsupportive of my dealing with the pain. I don't sit around and complain all day. I am in pain most days, almost all day long, because of how much I have to do. And don't get me wrong, he treats me great otherwise, but he's being so very selfish right now with all this. Just as an example, he always says (when I bring up the pain of my RA), "well, how do you think it is, living with someone with pain ALL the time??!!?". Of course those are fighting words. Ladies, you all know (and men, you cannot deny lol) that when men get even a cold (and they are otherwise healthy) they are big ole babies! But I've been through SOOOO much and I never complain until I'm basically in tears over the pain. In other words, you know I'm in severe pain when I actually say something about it. Otherwise, I wear the happy mask. I fake it. I don't want to burden others with my problems or pain or complaints.
I just wanted any advice, because it's like talking to a brick wall. I always tell him this will never go away, and most likely will get worse over time. But he has not one iota of sympathy for me. He complains once he's done for the day and I am still going, looking at him with resentment, wishing that I wouldn't have to ASK him to walk the dog...instead I look at him with the evil eye as I get up and gear up to take the dog out in the cold even though I've already had a horribly busy and painful day. I just don't know what to say to make him understand how bad this hurts, and how it breaks my heart to not have his support. It just breaks my heart. Thanks all,
So sorry you re going through this, I have AS(ankylosing spondolytis) and I fully understand about daily pain. I refuse to take any kind of pain meds on a regular basis because I have a family history of addiction and dont want to be like them.(my mother uncles aunts abuse pills and I dont want to go there so I will suffer until I am about to die per say) Honestly, I dont think men get it, its like you are supposed to keep going no matter what(I had pneumonia last year and rested for one day and was up the next taking care of kids) and if they get a little sniffle then they can lay in the bed for days at a time, what I wouldnt give for that luxery!!! Although I cant offer you any great life changing advice, I can tell you I understand and know where you are coming from. Maybe try expressing your feelings about it, I have found writing a letter can be useful because you can say everything you want. That would at least get the dialogue going and get him on the path to some sort of understand about what you are going through. He will never truely understand unless he experiences it himself unfortunately. Good luck to you.
Men in general are hard-wired to "fix" things that are broken. When they run up against something they can't fix, they get frustrated and often that frustration manifests as blaming the unfixable object (in this case, you). Men tend to not be able to be empathetic - as trying43 said, if they haven't seen it, touched it, smelled it, tasted it, heard it or otherwise experienced it for themselves, it doesn't exist in their world.
I had RA when my husband married me. He thought he knew what he was getting into and for the most part it works out well with us. But he's not perfect and the frustration does sometimes come out.
It sounds like you both could benefit from a few sessions of counseling. Ask for a referral to a therapist who specializes in couples going through chronic disease. Playing the martyr never, never works because men just don't hear those unspoken messages we're trying to send!
In the meantime. look up an essay called "The Spoon Theory" on the web. It was written by a women suffering from lupus, but her essay applies to anyone with a related autoimmune disease like RA, AS, fibro, etc. Print out the essay and hand it to your husband to read.
Hey you guys,
I just started one on one therapy and I am going to see if she'll see both of us; if not, my husband (either way) is going to start one on one therapy. He's also in the beginnings of switching from Zoloft to Lexapro, being that anxiety is his issue (as well as A.D.D.). So we're dealing with quite a bit right now.
The therapy is helping me a lot, but I have so many issues to talk to her about that I may start seeing her bi-weekly so we can start to move forward. But first thing Monday he is calling to see his own therapist and then we will work on couples counseling for sure.
@Carol - I am going to have him read the spoon theory right now before we head to bed. THanks so much for 'listening' to me venting. We'll get there. we will. It's worth saving and it breaks my heart that my soon to be 3 year old is hearing and seeing this, and I know he's understanding what's going on. If anything, he's my motivation for getting the help and doing it immediately if not sooner...Thanks ladies!!! It's great to know that I'm not going crazy...ha...But seriously it helps to hear other's side/perspective. I really do appreciate it. Have a wonderful night.
ok Carol, thanks for making me cry!!!! But in a good way. He gets it now. I am now going to email it to my extremely unsupportive mom and sister in hopes they get it. Chances are, they'll see the length of it and barely skim through it. But it's worth a try, right?! Great analogy and story. Thanks so so much for sharing.
[[big hugs]] Glad to be of help, sweetie! It sounds to me like you're a fighter, and that's a good thing!
My own sister never really "got it" until she saw my and thousands of others posts on a Facebook message board for women with RA and other auto-immune issues. She ended up apologizing to me for decades of not really "getting it", particularly when we were growing up. It's tough on a child when their sister or brother seems to be getting all the attention because of an illness. Now we're in our 50s and getting along better than ever. Thank heaven for social networking!! :D
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