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Does anyone on here ever feel as if they don't get any type of support or understanding from their spouses or significant other?
khewitt, I have learned firsthand that relationships in which one member of the couple lives with chronic illness require even more openness and communication that other relationships. (I read somewhere that as much as 80% of marriages involving chronic illness end in divorce...I need to look for a source to cite.)
During this past year I have opened myself up to talk about the good, to talk about the bad, and to talk about everything in between. I have also realized that when I need a certain type of support, nothing works better than being straightforward and asking for this help. Sometime I feel like it should be obvious to others what type of support I may need at any given moment, but this is often not the case.
I have also had to get past my own personal fears of being a "complainer". In my opinion, there is a fine line between a)talking about the challenges of living with rheumatoid arthritis and b)whining/complaining. I continue to learn that staying on the right side of this equation is good not only for my personal being, but also good for my close relationships and those around me.
My relationship of 9+ years has grown much stronger during this past year as both of us have had to deal with the progression of my RA. I wish you the best.
I havent been able to find anyone in the past four years that wasn't completely freaked out by my situation.
It's been a very hard adjustment.
I hardly even admit it to myself, but I get very lonely sometimes.
The most recent post at A Chronic Dose includes a link to a piece that was written a couple of years ago on marriage and chronic illness. Be sure to take a look!
http://achronicdose.blogspot.com/2006/09/relationship-in-numbers-as-some-of-you.html
khewitt, I have been thinking about your question and wondering how you are doing. I am very fortunate to have a supportive spouse but also wonder if sometimes what looks like a lack of support is actually a fear of the unknown in your spouse. I know my husband has said many times that he doesn't always know what to do, he gets scared sometimes and pulls away out of fear. Could that be happening? I don't know your situation so I am just throwing out ideas. As much as it is a challenge for us living with a chronic disease, it also changes the lives of those closest to us. Anyhow, I hope all is well.
In all honesty, Ive tried to relay what i have learned about the condition to her but it doesnt seem to either set in or she doesnt really seem interested. From day one I have never been asked things like: "how are you feeling today?" or "is there anything i can do to help you?" Its very frustrating that when i have to have my scripts picked up, that it's money she did not intend to spend. Im a very giving peson, but sometimes she can be so selfish about sttff like paying the bill to go see my rheumy over getting a new cell phone.....or why on certain days after a 14 hour shift at work, i dont feel like doing anything. Ive tried and tried to talk to her about how i feel and it just seems to go in one ear and out the other. Thats why i am glad that i have found a few disscusion boards. Its nice to be able to talk to people who have the same "super power(s)" as me.
Khewitt
I agree with RA guy , you have to tell people what you need and how you feel. You are the one that needs the support. if you are not getting it from her then hop on the blogs and you can get it here. There are plenty of people on here to support each other.
Best of luck to you.
It is always difficult when you don't know all the facts so I can only say what I say from my own experiences. One of the biggest hurdles I have had to overcome with RA (and still working on it)is to share my feelings and not assume that those around me know what I am thinking. One day I told my husband, "I just want you to feel sorry for me today." That is just how I felt that day. It was hard to say that out loud though. Is it possible to tell your spouse that it hurts your feelings when a cell phone is more important than your prescriptions? Or "Hey, I know this is hard for you too, but I really just need to share with you each day how I feel and it makes me feel better when you ask me instead of me having to tell you." I think sometimes it feels better to be asked because then we don't feel we are complaining all the time. It sounds like your spouse is really struggling with this too and maybe is becoming withdrawn rather than receptive to helping you through this? I am sorry khewitt. We do need our other half during this time more than any other time, don't we? I am sending good thoughts your way that this works out but also hope you continue to find support online. I have met such wonderful people.
I becamoe one of the 80% as my wife(ex) couldn't accept my new superpowers and the effect it had on our relationship.
It started out being me and the fact I didn't tidy up, or help with the gardening etc (when in fact i was in cronic pain, just laying on the sofa). I tried to hide as much of the pain from her and she never saw me crawling to the toilet on my knees and elbows because I couldn't stand or put pressure on wrists and ankles.
We went to councelling and as a proud bloke I refused to say much to start with, but then I found it fantastic to explain how I felt and what I was feeling. As we wen back for each session I felt happier, but my ex started to find it harder and harder as the discussion revealed it wasn't the chores that were the issue but me.
In the end she divorced me (unreasonable behaviour - that being, getting RA) but it was then that I really accepted who I was and started my change into becoming a superhero.
So, I'm now single, I have joint custody of my son(6 years old), and the relationship between me and my ex is the best it's been in 3 years. She can now get on with her life withour worrying about me, and I'm building my new life.
I've been on a few dates, and one of the first things I say it that I have RA. I get a few questions about it, and then we talk about other things. Most I have never seen again, but one has asked to meet up with me again. So who knows.
I always think it's harder on those who live around you. They don't know how you feel, they want you to be better but feel powerless to do anything about it. Some don't worry about the powerlessness and support you as best they can (within limits, afterall they are human) and some find the powerlessness very hard to deal with.
They have a choice, we don't. So we just have to get on with it, and enjoy the moments of happiness that do come our way.
Have date coming up - time to mention the RA - will she stay or will she go?
:)
You will have to keep us updated. :) Good luck.
For those of us who have a spouse/siginficant other that is looking for more information on living with someone who has a chronic illness, there a book called "Beyond Chaos: One Man's Journey Alongside His Chronically Ill Wife". My husband of two years and I are dealing with the ongoing struggles of me having RA (as I was just diagnosed in January). I heard good things about this book on another RA board - we have ordered it. Will give an update on what we think about it after we have both read it.
Good luck to everyone out there. xoxo
:) - Big smiles here. After a long discussion about RA and the effects it can have on me and the new budding relationship, I got a "We'll just have to deal with what comes along." and little kiss.
Let's see what happens next...
Great news, Mikeymoo. As Raandme mentioned earlier in this thread, I can only imagine how difficult is must to be on the dating scene while living with a chronic illness like RA.
mikeymoo-
i'm really happy for you!
i have a date coming up. he works in my chiropractor's office (about the only place i would have a chance to meet people since i barely ever go out!) anyway, he knows i have arthritis because he sees my wrists and fingers and the JRA rash and he sees me hobbling sometimes, but he still asked me out! i don't think he realizes just how bad the RA is though. it will be interesting to see if it goes anywhere, and if it does, how soon "the talk" will have to happen.
Robin, that's exciting! Let us know how it goes.
I have a teeny tiny crush on one of my fellow Arthritis Society volunteers - he's my age, also has RA, and is very cute! The other attractive thing, of course, is that since he also has RA, there would be much less explaining to do.
Best of luck to all three of you....
So had another "discussion" the other day with my wife. Things got pretty heated and she asked me whats the biggest thing that bothers me. I honestly told her that her lack of interest in learning about my "superpower", whether thru me or the pamphlets, or internet was the biggest thing. I have taken y'alls advice and started tell her about my bad days and what im expierncing. Her reaction was just saying that she doesnt want to "dwell" on it. I dont know whether to see that as a positive thing or a negative thing. I have become a very to-the-point person in the past few months and i try my best to pass the knowledge on as i learn it, but nothing i can do seems to get her to actually learn more with or actually show more interest with whats going on. Its definately frustrating.
I'm quite fortunate to have the most supportive husband in the world. He doesn't "understand," but he believes in me, believes me when I say it's a bad day, and brings me stuff so I don't have to struggle up. He taught himself to cook so I wouldn't have to stand for too long at a time. Whatta guy! He has heart problems, but we are managing. The children (adults) don't understand, but they accept and support. Same with the grandchildren. I'm so blessed! My husband says that he is blessed, too. Life is a struggle, but we will make it. We are determined.
I have found over the last 3 years that RA can be extremely stressful to a marriage. It has taken me 2 years to come to grips with having a chronic illness. My husband is still coming to terms with it. The first year after my diagnosis of RA, OA, and Sjogrenes' Syndrome my husband refused to even hear about any of it. I was even told to shut up and stop talking about anything to do with it!!!! He has come a long way since then. He comes with me to Rheumy appointments, therapy appointments, etc. There are times that he still feels anger that I can not do what I used to do. The roughest spot we are having right now is that he is the sole bread winner. It rubs him the wrong way every now and then, but all in all we are coping. We are having to file bankruptcy, but will get to keep our home. I know we will have many more rough spots to deal with over the years, but we will hopefully work through each one together.