Could Divorce Be One More Pain from Rheumatoid Disease?

clown-fishI’ve received several emails and messages from people living with Rheumatoid Disease (PRD) who have been divorced by a spouse, sometimes in part due to ways Rheumatoid Arthritis / Disease affects them. It’s sad to hear from a woman who can’t figure out how she’ll provide for her kids, or a mother whose kids were removed by a husband fed up with a wife who can’t “work.” It’s equally sad to hear from a man abandoned when he can no longer accomplish what he did in the past.

One PRD asks: Is divorce one more loss from RA?

I cannot write this in a public forum. You’ll understand in a minute.

I was diagnosed with RA about four years ago, at 54. It progressed rapidly. I had all the difficulties we share. You know how it changes your life. Difficulty walking, keeping up with chores, dressing, washing hair, taking care of the house and garden, the cats, etc. The drugs made me tired and I was fatigued. However, all this time I worked full time at a stressful job and put in more than a normal day’s work. Fortunately, I regained more mobility recently after my rheumatologist added new drugs to my cocktail. I do not have to use a cane anymore.

Mid-January last year, my husband of thirteen years said, “I can not live like this any more.” Five weeks later he said, “I have an apartment, I am moving.” I haven’t seen him since March. It took me totally by surprise. I had no idea. I had been thinking about renewing our marriage vows and then this happened. I love him very much.

He would not tell me what happened or if I had done something wrong. He refused counseling and he refused to talk about what bothered him. He basically left in silence. I only hear from him via email.

I have examined every corner of my life and the only thing that has changed in me is the RA; it made me more dependent. I am careful not to assume that the RA had anything to do with his departure, but if it did I see it as another horrible outcome of this disease. I have read that this is not an infrequent occurrence; men leaving wives who are ill. My G.P. acknowledges this.

This is what I wanted to tell you; about another kind of loss one can experience with a disease like RA.

Perhaps husbands, wives, or partners need counseling to understand and cope.

Does Rheumatoid Disease impact divorce?

The large Strand study on women with Rheumatoid Disease found “22% of divorced or separated respondents indicated that RA had at least some role in their decision.” So it makes sense that patients have brought it up many times. A couple of years ago, we looked at some statistics on divorce and Rheumatoid Disease, but the stories patients share tell the real story of divorce and RD.

Nothing with RD is simple, least of all marriage and divorce. But a challenge like RD can bring out the best in a spouse or make their selfishness and flawed character more obvious. And we have seen plenty of both.

Perhaps marriage is one more area where greater awareness could make a difference.

NOTE: Rheumatoid Awareness Day is just two weeks away – February 2. This year patients and organizations across the U.S. and in other countries are observing the second ever awareness day for RD. For updates on RPF sponsored Awareness Day events – click here. If you have a blog of any kind, please join our special blog carnival – What Would Rheumatoid Awareness Mean to You?

Recommended reading

Kelly Young

Kelly Young is an advocate providing ways for patients to be better informed and have a greater voice in their healthcare. She is the president of the Rheumatoid Patient Foundation. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. Through her writing, speaking, and use of social media, she is building a more accurate awareness of Rheumatoid disease aka Rheumatoid Arthritis (RA) geared toward the public and medical community; creating ways to empower patients to advocate for improved diagnosis and treatment; and bringing recognition and visibility to the Rheumatoid patient journey. In 2009, Kelly created Rheumatoid Arthritis Warrior, a comprehensive website about RA of about 950 pages and writes periodically for other newsletters and websites. Kelly served on the Mayo Clinic Center for Social Media Advisory Board. There are over 42,000 connections of her highly interactive Facebook Fan page. She created the hashtag: #rheum. Kelly is the mother of five, a home-schooler, Bible teacher, NASA enthusiast, and NFL fan. You can also connect with Kelly by on Twitter or YouTube, or LinkedIn. She has lived over nine years with unrelenting Rheumatoid disease. See also http://www.rawarrior.com/kelly-young-press/

27 thoughts on “Could Divorce Be One More Pain from Rheumatoid Disease?

  • January 21, 2014 at 7:25 am
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    I too was shocked and then devastated the first time when my now ex-husband simply disappeared when our first child became deathly ill and spent two months in the hospital. Later after we reconciled, he turned around and vanished again when I became very ill. Both times I remained strong and coped; perhaps he knew that I would. Eventually we divorced. We have been divorced for many years and I see he repeats the same patterns with his second family. My conclusion is that often men run from illness as they are not raised to be caretakers like women are. Conversely, I know of a two men who are virtual saints, who take care of wives who have serious chronic illnesses.

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  • January 21, 2014 at 7:57 am
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    Don’t forget those of us who were hit with RA when we were on the relatively young side, and who will never even have a chance at ever being married because their RA diagnosis makes potential significant others flee in terror and dismay.

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    • January 21, 2014 at 6:51 pm
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      Tracy, don’t give up looking for a husband. There are men wiling to cope with your disease. God bless your days.

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  • January 21, 2014 at 9:48 am
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    At first my husband had a hard time understanding, and it caused a lot of tension in our marriage. I am finding that as time goes on, he is more aware of and understanding of the disease and its effects on me. I think it is really a matter of trust. He sees how hard i try and how much I do when I am well enough; and the things I do to try to make up for what I can’t when I’m not well (even if it’s just spending time with my kids snuggled around me in bed; at that moment it’s the best I can do for them, and they know they have their mom. I don’t think they care that I’m not running around the back yard with them on the days (many days) that I can’t..) He trusts that when I say I’m not well, need to rest, or can’t do something, it’s genuine. I try to never use the RA or symptoms as an ‘excuse’ when I am feeling okay but not wanting to do something. I will just say honestly, I’ve unloaded and reloaded the dishwasher and been in the kitchen for an hour, I’m going to sit down and leave the dishes for you… I also trust that he’s doing everything he can to help… It has taken a few years to get to this place, and it was waaaay more challenging before diagnosis and treatment. We had a year of terrible fighting when I was pretty much out of commission with a newborn and he needed to go to work. I guess my whole point is, if your spouse is for the most part a good person who loves you, give him or her some time and some education and they may learn to adapt along with you. We need time to grieve and adjust to our disease and modified plans for our lives and so do our spouses. Tracy, it must be so hard to try to meet people and date with this disease. Don’t give up. The right person will love you for who you are and will not be swayed by your challenges. Everyone has challenges (and if I were completely healthy, I’d much rather choose a partner with a medical issue than a major character flaw or personality issue–tons of people have those and somehow still convince someone to spend their lives with them); I think there must be lots of people out there willing to get to know and love someone with medical challenges. Once you find the person (and all it takes is one; even if the other 99 per cent get weeded out), you will know that your disease will not scare that person away as they are accepting the challenge head on, and want to love and support you through it. I hope it happens for you and at the right time for you…

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  • January 21, 2014 at 11:09 am
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    My long-term relationship recently ended as well. There were problems besides coping with my severe, treatment resistant RA. I know the divorce rate among parents of children with special needs is much higher than the general population. I think if there is additional, long term stress to a marriage or relationship that neither party is prepared for, the odds of survival without significant support and understanding is low.

    It is unfortunately a myth that women are more adept at coping with the caregiver role. It is an assumption that doesn’t always hold up.

    I have decided not to hope for or seek another relationship. My focus is on building joyful experiences and quality relationships. I doubt I will ever entertain the idea of a partnership again. With chronic illness, I cannot afford the risk of the intense stress of a breakup and grieving.

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  • January 21, 2014 at 12:02 pm
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    I have often thought that if my ex-husband and I weren’t divorced before this happened to me, we most certainly would be now. He was never understanding when I was sick with a cold, let alone going through all this. I actually think my divorce brought on this disease, the new stress of living on my own and being a single mother. Luckily I found a man who has all of the qualities my ex-husband did not, and he has been very supportive and caring. I think that doctors should invite your partner to every new patient visit, and that counseling should be a part of any diagnosis of any chronic disease. But in the end, especially if there are already underlying issues, it all comes down to that person’s love and commitment to you that will determine if they can hack it or not.

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  • January 21, 2014 at 5:14 pm
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    Yes, yes, yes. Did wonders for my new sicky self image when husband started buying stylish clothes and using rogaine, and told me the RA was all in my head and I just wanted the attention. He refused to go to appts with me, and said he felt like he was married to an 80 yr old woman. I was 35 when it hit. Poor him! He left in my 5th yr of comparatively well managed disease. Ran off with a younger colleague, too.

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  • January 21, 2014 at 6:33 pm
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    These stories sadden me.
    At the weekend my partner lost his temper with me. we work totally opposite to one another so when one is working (both full time) the other has the kids.
    After doing his half all week we had one day off as a family but due to a nasty flare and working nights I spent the day like a zombie,god I felt so ill, and when its bad its like I shut down and need to sleep.
    He got frustrated with the kids and in temper told me I was a lazy hypochondriac who was wasting everyones time!
    I know he was just tired and fed up himself but im still upset about it now, I have a hard enough time convincing myself im not going mad as im not officially titled with RA its ‘inflammatory arthritis’ I went to the dr’s in private mostly as I was embarrassed to say outloud that I had some sort of pain problem (in case I sounded like a hypochondriac!!!)
    I think this is why I have started commenting here as of late as im just desperate to talk about it without feeling judged.

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    • January 22, 2014 at 7:40 pm
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      Kira, the statement he made was abusive. There is no excuse for it. It doesn’t matter how he felt, what happened, what you said before or after, what you did, that he apologized or didn’t. Statements that are made with the intent of harming you or putting you down eventually take a tremendous toll on your spirit and health. It is not good for the kids to witness either. Please consider the seriousness of what you shared with us here. I’m really glad you feel comfortable to share on the forum. It does help to have understanding people who know, first hand, what this disease is about. Take good care.

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      • January 22, 2014 at 11:32 pm
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        Thank you Sally,
        Your reply means a lot to me.
        Its so liberating to feel believed and listened to. x

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    • March 8, 2014 at 11:17 am
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      I was also first diagnosed with something other than RA because my blood work didn’t show the RA markers the first time. I developed them later on and was diagnosed then. It’s a hard road. I knew that the pain and fatigue were overwhelming. They actually gave me classic RA treatment without the RA title. Made me feel stupid at some points. I couldn’t sleep at night because of the pain of the covers touching my feet, but not sick enough for RA? I felt abused my my Rheumatologist. When I found a new one that I really came to like, he not only did New testing, he looked at my old labs and said I should have been diagnosed with RA all along. Negative for the RA test happens to lots of people that actually have RA. Time for a new doctor? One that will listen?

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  • January 21, 2014 at 7:02 pm
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    I’d like to chime in here with very similar but opposite take from a perspective of a “man” dealing with RA that is leaving his wife of 13 years.

    I was diagnosed with severe RA at 52, and the first 18 months was a living hell. However being the main breadwinner, I maintained my stressful job that included 50% travel that needed to be done on crutches and canes at times, having to explain to TSA the multiple braces I wore under my clothes when they showed up on airport x ray scanners.

    I can say that the marriage was already failing, as we were living like 2 separate people for much of that time. But it was my RA that brought to light that I needed to find a way to take care of myself. I could no longer carry the burden of a self absorbed wife that somehow always found the time to take care of everyone “outside” of the home. Volunteering for friends and they’re families in time of need, but would rarely have time to cook a meal let alone shop for food when I was down and out. The few times she did attend doctor visits oddly turned out to be comments that would be used against me with her interpretation…

    As many have to do (another topic for discussion) I had to go with what the insurance company would “cover” (at 6 month intervals) before getting to the drug cocktail that now seems to be holding me to what I’ll call a tolerable level of discomfort (and for that I am grateful for).

    I may be crazy, but I have made a vow to myself to take “the path of least resistance” even if it means going this alone.

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    • January 22, 2014 at 3:18 am
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      HI Jim,
      Wow! your job entailed 50% travel…OUCH!
      I had a mandatory update( AKA study day) at work yesterday, we had to sit in a chair for 8 hours (they did give us a break and lunch…lol) It was bloomin uncomfortable, so I take my hat off to you for doing a job like that. I noticed how after an hour I started to look like I had worms cos I kept wriggling around into different positions, I hurt more at the end of that than after a double shift..doesn’t make sense does it?
      Its amazing what we go through to provide for our families don’t you think?
      Good luck on your path Jim, all the best 🙂

      Reply
  • January 22, 2014 at 9:05 am
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    20 years ago I got divorced from my first wife after being diagnosed with RA and dealing with the pain and adjustment issues – you all know the drill. There were other issues, but a big one was that she started treating me like one of the kids, trying too hard to take care of me and seeming to want me to be dependent upon her. Years later I married another woman who gave me what I needed: emotional (and occasionally physical) support but also respect and independence. Yes I have RA, but I am still a man. That respect and acknowledgement that I still had value as a person made all the difference.
    When my 2nd wife became ill with cancer, and eventually passed, I made a point of always being there for her, fully participating in her treatments, dr visits, etc. because I knew what she needed. Some people expressed admiration for me for this, which I found amazing – this is what people should do for each other. When I would express that, several people told me of loved ones who had walked out on sick partners. These people did not have the empathy or courage to stay with someone who really needed them? I don’t want to think that such people exist, but sadly they do.
    My message is, if you find yourself with a weak partner who can’t deal, stay strong, do your best, and get out of the relationship if you need to, to deal with your illness. With luck (and your obvious courage and strength) the right person will appear in your life, and they will be a real partner.

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  • January 23, 2014 at 12:36 am
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    About 50% of the women in my autoimmune disease support group are divorced as a result of their disease. The latest, a woman married 35 years, her spouse walked about because he said he couldn’t stand not knowing how she was going to feel each day.
    I was diagnosed at age 10, so my entire life with my husband (together 22 years now) has included my disease. In some ways I think it is easier to know up front that we would be dealing with my health. My in-laws REALLY discouraged my husband from marrying me because of my health issues. They’re still waiting for the divorce ;P (yes they are awful people).
    All married people have issues. I don’t see how dealing with our disease is so different than any other big problem people might have to deal with. I assume the marriages that can’t withstand RD wouldn’t withstand any other big issue either.
    I just feel really terrible that so many people are left alone when they are the most vulnerable.

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  • January 23, 2014 at 11:51 am
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    I was diagnosed with RA at the age of 32, I was divorced from my childhood sweet heart less then 10 years later, 25 years……now that I look back, it was more me then him when it came to dealing with the RA, he forgot most of the time I had it. And, I couldn’t forgive him for forgetting. At this stage in my life, I would rather be with my friends then taking care of a selfish person and myself

    .

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  • January 25, 2014 at 7:30 pm
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    After coming off an infection, breaking a tooth yesterday (scheduled root canal), and black stools today, I wonder how much our wonderful men can take? Sometimes I feel like I don’t want him to know though I know he loves me.

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    • January 29, 2014 at 11:47 am
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      wow, that is an honest and moving description of learning to come to terms with all the practical and emotional aspects of living with someone with RD. Thank you….

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  • January 28, 2014 at 7:25 pm
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    Let me first state that I do not believe that any of what I write below is a valid reason for divorce. I’m very happily married, have never been divorced, and have no plans of getting divorced. However, I’ve been thinking about this post since it was posted and have a few thoughts to share from a different perspective. I am the caregiver and my wife has rheumatoid disease. I know that much of what I have observed since my wife’s diagnosis is not reserved just to those with RD. Yet when the doctor said, “You have rheumatoid arthritis” to my wife, I had no idea what I would experience or what RD would demand of our marriage. Again, these are simply my observations as I think of them. They are in no order of importance, but are rather a list of the variety of ways that RD affects a marriage.

    First of all is the pain. I love my wife. Dearly. This means that when she is in pain (which is all the time), then I hurt. It’s not that mind numbing joint piercing pain that her disease brings her, but there are certainly many moments when she is pain that I too feel physical pain. It’s the pain of helplessness. Of watching someone you love hurt beyond words and not being able to ease that for even a moment. How can that not cause me pain as well?

    RD is a thief. It steals lives by taking the best of a person piece by piece. It steals through the pain, the fatigue, the loss of function, and the inability to do the things that she once wanted to do. RD is greedy and selfish and always takes first before anyone else, even before the person with RD gets a say. How this relates to marriage is that I no longer get the best of the person who is my wife. I don’t even get second or third best. RD always steals the first part. On the good days — when there is slightly more energy than the normal days — when there is a second part of her to give, those moments go to the kids because they don’t understand like I do. Or, that extra energy gets used on work, shopping that I can’t do for her, pouring over insurance statements for hours to make sure the billing is correct, etc, etc, etc. Whatever it is, RD makes you have to settle for less than the best of the person you once knew. I understand this now, but it took me a while to figure out on my own.

    Sex. Yeah. It’s changed. Drastically. Whether it’s the pain or fatigue or the side effects of the medications or other complications of the disease on her body or, most often, the combination of all of that there is no way to ignore how RD has impacted this part of our marriage.

    Perhaps one of the hardest things I am learning to deal with is the sheer loneliness that RD brings on the caregiver. Yes, we’re still married and we still love each other and our marriage is really doing well. I don’t want anyone to think otherwise. Yet it’s the part of RD being a thief. As it steals my wife through fatigue, loss of activity, and the pain that limits her to bed it also steals the companionship of our marriage. It’s hard to explain, but it’s one of the realities of the effects of the disease that is still hard to deal with.

    So to answer the question, does RD affect marriage or lead to an increase in divorce? I can easily see how it could. I could point to many other ways that RD has affected our marriage, but I think this is enough for now. The reason I offered my insights are solely to echo the importance of raising the awareness for this disease. That in rheumatoid disease education there might also be some education given to couples as they face this together.

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    • January 29, 2014 at 11:05 am
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      John, your post is a very accurate portrayal of RD and the strains it puts on a relationship.

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      • March 27, 2014 at 9:44 am
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        I am so glad you published the caregivers perspective. I am a 44 year old woman who bas been newly diagnosed with RD. When my husband found out he became emotional and I thought he was being compassionate to my situation….MY situation. It didn’t occur to me that this is OUR affliction we will share together. He told me later that his emotion was due to the unfairness that the kids are grown and we can finally start doing things together and now we have been thrown a curveball. I am going to have to be mindful of his needs too. Chronic pain can be so debilitating and emotionally exhausting that its difficult to not be sensitive when your spouse is upset with your disease. I can see I have some work to do in bringing some of my focus back on my husband and planning some activities we can do together on the good days.

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  • March 8, 2014 at 10:09 am
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    My husband talks on and off about me going out and getting a job. He feels that if I can walk for exercise, I should be able to work. I am a waitress in high end restaurants. There is no way to do that with RA. My hands can’t hold the plates, much less a tray. I do receive social security disability and Medicare. I still am able to cook and clean so I am still taking care of him. I wonder what’s going to happen when I can’t anymore. It’s a scary thing. I guess I think he might leave when it gets that bad. Or I’ll have to hear about how useless I am. I am having a hard time making him know how serious this is. His mom had MS and had a job, so I have a high bar to follow. Regardless of the fact that it’s hard for me to get household stuff done. My hands hurt all the time. In the six years I have been sick, I have not had even one pain free day. Thanks for listening as this is something I would never say to anyone that knows me.

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  • April 15, 2014 at 12:42 pm
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    Hello, I have been reading some of these comments and I feel very sad about what many women have had to go thru with RA and the outcomes. I guess I am very fortunate to have an understanding wife and family. I have had RA for 24 years now,since I was 33. I do know the physical and mental/emotional issues associated with this disease. But I have never had to deal with issues of a frustrated spouse or family. I do remember sometimes I did wish that I could just die because of the pain and suffering (that was years ago). You women are very strong going thru divorce and everything and I have a great respect for you all. I wish you all the best …… I’m sorry, it makes me want to cry…

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  • May 5, 2014 at 11:16 pm
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    I am laying on my couch feeling sorry for myself right now. While looking up side effects of Remicade I came across this blog. I will be honest and say I only read a small portion of the subject of RA and divorce because I’m exhausted. I will delve in much deeper another time. I was diagnosed 1 year ago and have made little progress. I’m angry, frustrated, sad, and feeling very alone. I get the feeling my husband feels the same. I feel like a burden and most of the time I don’t even talk about my symptoms for fear of pushing him away. I’m not sure where I’m going with this post, I suppose I’m just venting. I feel like nobody understands (including my Dr)the day to day struggles and the heavy emotional impact of this disease. I feel alone. I’m a RN so I understand how important advocating for my patients is, and I feel I don’t have that person in my corner. It’s just me battling it out with pain, stress, depression, insurance companies, and so on. It’s only been a year and I feel like giving up. Does it get any better? Anybody have any recommendations on how to deal with the stress on my marriage?

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  • August 20, 2014 at 5:06 pm
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    I too have RA and am now divorced. Not to say that my marriage would have worked otherwise, but nearly every argument we had somehow involved my disease. At a relatively young age I have no interest in dating because I can not deal with someone else’s lack of understanding. I would rather be able to lay down without being judged for it. Now at least I only have to take care of me.

    Reply

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