Is Rheumatoid Arthritis a Factor in Divorce?
At a meeting of Rheumatoid patients, we heard one describe how her spouse is leaving her as a result of her Rheumatoid Arthritis diagnosis. Everyone in the room gasped as she recounted how her husband told her that he did not want to be her caretaker. However, I’ve read many sad letters with similar stories. Both husbands and wives are shocked and can resent the drastic changes which RA can cause.
Does RA lead to divorce? How often?
Studying Rheumatoid Arthritis and divorce
It’s often stated that there is a link between RA and divorce. Searching Google, there are still some popular articles that were published in the 70’s, 60’s, and even 50’s. If you’ve read much RAW, you may know that some of those 50’s articles have some unpleasant ideas.
Like this prize abstract: “The hypothesis of suppressed hostility as a factor in rheumatoid arthritis is supported by the finding that rheumatoid arthritics are more liable to divorce, but put up with an unsatisfactory marriage longer than those who are free of the disease. This is more striking for males than for females,” Arthritis and Rheumatism.
More modern studies (2009) don’t blame the patients, but do confirm a correlation between a Rheumatoid Arthritis diagnosis and divorce, with 25% of female patients surveyed identifying RA as a “contributing factor.” Yet, reading the description of RA, you might wonder why RA would have much influence on anyone: “Rheumatoid arthritis is an inflammatory disease that causes joint pain and swelling, commonly in the hands, wrists and knees,” Healthy Aging.
The divorce rate of RA patients is reported to be 70% higher than that of the general population (American Journal of Medicine). However, a 1991 study of over 7,000 rheumatology patients found Rheumatoid Arthritis patients were not more likely to divorce than other rheumatology patients, after “age, sex, population size, and ethnic origin” were controlled for (Journal of Rheumatology). Remarkably, however, RA patients were five times less likely to remarry than people with arthritis/osteoarthritis.
You can find dramatic articles saying RA can lead to divorce, but not much clear-cut study of the subject. Even a partial list of RA issues clearly demonstrates the stress RA can create on marriage:
- It’s a shock and disappointment when a spouse can no longer do the things one expected.
- A serious illness like RA can be a drain on relationships, finances, schedules, and plans.
- The chronic pain of a disease like RA can be a barrier to all kinds of activity, including sex.
What do you think? Does divorce and remarriage differ with RA patients? Does it vary with the severity of the disease or disability? Is it a similar situation to any chronic illness?
Recommended reading
- Thinking about Love Bug Season & People with Rheumatoid Arthritis
- Preclinical Rheumatoid Disease: There Are No Joints in the Lungs
- Letting Fumbles Strengthen the Heart
- “Fine Thanks, and You?” and 5 More Stupid Things I Say
We were already well on our way to divorce when my Rheumatoid Arthritis diagnosis came in. Was it a contributing factor? I don’t think so. Admittedly, my ex-spouse had told me if I was sick, he couldn’t seem himself as a caretaker, but that was a personality flaw that hadn’t come into play as of yet.
As far as remarry, I fully intend to. I live with a wonderful man who fully “gets” that some days the couch is my best friend. He empathizes, sympathizes, easily puts aside plans, reschedules, takes care of my kiddos, cooks dinner for all of us. Whenever I thank him, usually with tears in my eyes, he says it’s his job.
I am blessed, I know that. Trust me, I don’t take it for granted.
Jennifer
thanks for sharing, Jennifer. It’s always so good to hear about people like that & it encourages everyone.
I don’t think this is the kind of topic that studies can really illuminate. Each marriage is different…each case of RA is different. My marriage has just ended, and RA was certainly a factor. But there were other factors. There is no doubt that RA puts pressure on a relationship…if there is already pressure there, it just might be the tipping point.
It contributed to my marriage ending after 20 years. I was diagnosed when I was 26, and I am now 44. He blamed my RA for leaving. My grandmother was crippled by RA and he said he wasn’t strong enough to deal with that. Such a great guy to leave me to deal with it alone. Or worse, leave my teenage son to deal with it.
I’ve heard a story like this too many times – not a great guy at all, but I hope you & your son can manage (I have 2 teen sons so I can imagine its hard). I don’t know what is inside of some people who “don’t want to deal with that” instead of just becoming stronger to be able to deal with it. We, the ones with RA, don’t have a choice. We have to deal with it, so we become stronger and just find a way. That is what love should do also. In my opinion of course.
So true, Kelly. That’s what love should do! Unfortunately it doesn’t always. Ultimately we are better off without people who aren’t strong enough to deal with it. It’s good to know there are good men out there tho! Thanks Jennifer 🙂
rawarrior It is not an easy thing, for either party…
It is ironic that the UK seems to be lightyears ahead of the US on research! Thank you for posting this…very informative indeed! Now if only we could get this info. out to our docs here 🙂 I have always looked to the European version of the FDA for findings. Why? Because they tend to be way ahead of the curve on things. Here, I think we are being mucked down in the politics of monetary influence through lobbyist, etc. Again, thanks for sharing the research info.
rawarrior Linked to that we’ve just published a study in the UK looking at the impact of RA on the family. http://t.co/0t4t3MDg
rawarrior yes
I would suspect that divorce is higher in any chronic illness situation. But keeping in mind that divorce is high in the US anyway it wouldn’t surprise me at all that divorce will be higher when the couple must work harder at their relationship. We tend to throw in the towel (generally that is) here and our society portrays switching partners like buying a new pair of shoes. This is not my philosophy at all but it is very prevalent on our media, etc. I believe in “for better or worse”. And I feel a huge part of this problem is that ra doctors never even suggest that ra would put a strain on marriage and encourage couples to get counseling from the onset to help them navigate through the possibly turbulent waters ahead. Good news is though that since the economic downturn, divorce is down due to no money. It is sad how little current research has been done on how ra impacts relationships/marriage. Thought provoking post.
Yes, that’s right. And that’s the reason I filed this post in my Twitter #PM101 hashtag (Personalized Medicine 101 medical elective), since divorce has a very personalized effect, and yet it is NOT typically included as part of the “healthcare” equation. The ramifications of a couple not getting along, on the health of each other, not to mention that of an entire family, are far more significant than ordinarily acknowledged. Yet patients would receive much better healthcare if it was. I don’t think PCPs and rheumatologists are trained to handle this aspect comfortably, yet if they had the “right stuff” they could do so. Certainly, threat of legal action could influence their behavior.
Another brilliant post by Kelly!
I got divorced after my diagnosis but it had nothing to do with my RA. or maybe it did. i initiated the divorce after putting up with his untreated depression which was the result of an injury. I guess I grew intolerant as I fought my RA and continued to work and try to maintain a normal life.
When I started dating my current man, his 80+ year old mother told him to stay away because I would become crippled. that is what she knew of RA. He stayed and admires every thing i do.
Interesting topic. Recently I was FINALLY diagnosed with “inflamatory arthritis” whick is most likely “serum-negative RA” by the rheumatologist and my internist. RELUCTANTLY, I started Methotrexate. I am 51 and have never been married so I cannot speak to the specific topic of marriage. However, I am no longer looking for a significant other. Between all the medical appointments (for RA/fibromyalgia and chronic asthma), medications, and constant follow-up appointments, I cannot imagine anyone wanting to take on the expenses I am incurring. I certainly am unable to keep house the way “I used to” working a full-time job and a part-time job to pay for medical expenses. I really do not want to hear “why is this place so messy?” when I walk in the door. When I used to spend time with family members, and sometimes from medical personnel, they always comment “man, you take a lot of medications” which is another thing I do not want to constantly hear. Last years medical expenses were a little over $9,000. If it weren’t for all the medical expenses I sure could take some pretty spectacular vacations! 🙂
thank you for the interesting perspective Kimberly. I think it’s a good percentage of us – the re-marry numbers are low. I wonder if there are many like you who say, RA is too much for someone to adapt to and battle so I’d rather cope alone than go thru that struggle.
Kelly I just wrote about this in one of my facebook notes. Not particularly divorce, but the impact that auto-immune has on the family in general. And almost certainly this contributes to the stress that leads to divorce.
Here is what I commented on:
“Again what is important is that when one is diagnosed with an auto-immune disease, the impact on the caregivers and the family members is almost never discussed . The care givers are not prepared for the changes that are going to take place in their life. When we look at what we need to do from and education standpoint, we also need to learn to educate the family on how drastically their life will change. Not everyone is ready for the roll of caregiver. Not everyone is ready for all of sudden changes to their priorities. It creates conflicts that families need to work through, so that the patient and the family members do not feel isolated.. Some people make better patients, others make better caregivers. From a marriage perspective, you can’t prepare yourself for these changes. You want the lover and the best friend you took those vows with. They are the same person but the disease changes things. And the goal must be to not let the disease impact, but that just doesn’t always happen. Believe me it is still there. We just need to find ways to deal with the change. Bottom line, more needs to be done. This is something that we need to work into patient advocacy, and have doctors’ brief family members on what to expect when one is diagnosed with an auto-immune disease. Don’t just hand out a pamphlet, spend time talking with the family.”
You can find the rest here:
https://www.facebook.com/notes/david-biundo/we-can-not-forget-about-our-famiy-members/10150764316880782
When a couple already has underlying issues, a chronic illness just adds to the stress. For my marriage that was the case. I hope there are couples who have such a strong relationship, that this illness would not break them. I wish rheumatologist would incorperate treating the whole patient including treatment for the psychological toll RA has on the patient and family.
I think it really depends on when your disease hits. For people already in middle age and maybe finding themselves bored and stressed in their relationship when RA hits, I think the likelihood of divorce is higher. But if, like me, you’ve dealt with RA your whole life, then as my boyfriend says it’s a fact of life. It is a part of who I am, but hasn’t taken over because I’ve always kind of had the same limits and I’m used to all of this. And so for him, it is more normal too. Granted, things have gotten worse with my disease over the last five years and that does cause some stress. But it’s not really the same I imagine.
I’m in a similar situation. When I met my husband, I had already been fighting this for 10 yrs. It was just how things were with me. His mother warned him off dating me over and over saying because I had RA it ruin his life. Well, lots of people start out healthy together and one person gets disabled in some way. We just started out with me disabled somewhat by my disease. It’s worked out for us, for 18 yrs, though not without stresses and strains. My husband has said once or twice it was nice to know what disease we were dealing with up front, rather than getting hit by it midway through our marriage.
It is a great point, Kirsten. When someone already has the disease, anyone they are with knows what is in the deal (a little bit of the sickness in the sickness’n’health part) before they commit. AND, if someone can’t even handle the idea of being a care-taker as some have stated, then they would be “weeded out” early on & never consider being with the person who has the disease. But those who marry a healthy person, with expectations of them, may not be able to handle it when they see the surprise of the diagnosis. Of course, they ought to do what it takes to be “up to it,” (the vow is for better or worse) as I said to Julee, in my opinion, but many won’t.
Yes it can and does especially if you are male and the main income and insurance provider. For younger people it may be different but for people in my age group the male is supossed to be strong and the main provider. If he is unable to fulfill these roles he is concidered an undesireable mate. This is not sour grapes but, rather is just the way it is.
Chronic pain doesn’t bring out the best in anyone. If a spouse can’t figure out when it’s the pain talking, the relationship is in trouble. Combine that with the lack of energy, constant worry about insurance and money, sleeplessness, and any fissures in the marriage will start to come apart.
Divorce with RA as a factor is something that concerns me often- Or at least as often as my RA feels as if it’s burdensome on my husband; especially those times I have not been feeling well for weeks on end.
My husband and I are 32 years old. This June 30th is our 5th wedding anniversary. I was diagnosed with RA almost 2 1/2 years ago. As you all know, it is unpredictable week-to-week. I am thankful for the periods I feel well.
My husband is a pretty amazing guy, and we met in some may say unusual circumstances….at a therapy group. We were both going through major life changes, and we both were dealing with depression. Because we both have gone through group and individual therapy, and are open to seeking help, I believe we have a very strong relationship; that will thrive even with my RA, but I do have insecurities–
What if he’s just staying with me because he would feel bad leaving me? What if I am too much to deal with, but he isn’t telling me? The worst one- If life is throwing us these difficulties now at 32, what about when we are 42? 52? 62? And the one that makes me saddest- What is my husband missing out on being married to a wife with a physical disability?
I read many posts from women with RA who are divorced and cite RA as a reason, but not too many people tell stories of husbands who are heroes. It’s nice to read the comments from those of you with supportive spouses. My husband has proven to be a hero and an advocate. He is my Warrior when I just don’t have the strength to be my own Warrior that day. I hope I can read this again in 30 years and say every word is true.
Rebecca,
I’m responding to the part about what is your husband missing out on because you have RA. I posted above, been married for 18 yrs and had RA when I met my husband.
My husband is very athletic. One of the BENEFITS to me having RA is that I am unable / do not want to go along on his jaunts. I stay home with the kids. When I need a break, I get by with something simple like a movie or a nap.
One of the BENEFITS to me having RA is that when our oldest needed homeschooling, I was already unable to work and was available to do that (still homeschooling, he’s a 9th grader now!).
One of the BENEFITS to me having RA is that I think outside of the box on how to handle things because I have to.
Another BENEFIT is that it is easy for him to see on a daily basis how grateful he should be for his healthy body. It forces him to take time and enjoy what it can do instead of working all the time and putting it off.
Try and see the BENEFITS that the RA has / will bring to your relationship. It’s not easy, and took me many years to reframe that way, but it really does help.
One benefit you have already is people here who understand! 🙂
Ms. M,
Thanks for the reply!
What a great way to look at the circumstances of dealing with RA in a relationship. Thinking back, my husband and I do discuss situations in which my RA is a “benefit”, but I didn’t view it as such until I thought about it from your perspective.
For example, we don’t have kids, and we really want to. After the diagnosis, we talk in terms about having kids from the perspective of what will fit into our lifestyle,such as for me to take time off from my job while the kid(s) are young. The idea of having Mom (me!) at home at the early ages appeals to us. I would not have been as open to the idea of taking time off from a career I spent the last 10 years building with work experience and an MA degree before my RA dx. So yes, it’s a great idea to think about how my RA BENEFITS my marriage!
I am sure my husband has his own benefits if he were to think about it in those terms, too. He has more time with “the guys,” because I would rather stay home and rest than hang out. 🙂
I think it’s really about how you frame the idea of the RA in your marriage, and how you adjust to accommodate it. Couples must grow and change; evolve together. This is true with or without RA-we just have a little more of a challenge.
I can only tell you what I have experienced, being ill with RA and associated AI diseases for 25 years, and will be married for 31 years this August. I think the ability to weather the storm of any chronic illness, is highly variable and individual to each specific couple. I dont think it is RA alone, that can stress out a couple. Any other chronic illness, and/or tough, long- term situation can impact the survival of a marriage.
For us, we both have a strong faith in God, and supportive family and friends who have helped out. When I was first going to receive the RA diagnosis, my rheumatologist called, asking if my spouse would please attend that important appointment with me. So ,even the rheumatologist seems to know that it is important to fight this disease as a couple and as a family.
There have been rough times, both emotionally, physically, and financially. Joint counseling is an option we found very helpful, both individual and couples.. And intimacy can require some innovative thinking!Overall though, I know of so many divorces, where no diseases are present in either of the spouses. RA can be a big problem to be dealt with, but it cant always be a predictor of divorce. That said, it is important to be proactive in action , to be alert to the stressors of any kind of chronic illness.
How do you feel that it has impacted your marriage and family,Kelly? Has RA significantly changed your relationship with your spouse?
Thanks for posting this blog — its something I’ve wondered about and haven’t seen much information on.
I worry because I’m the one with the main income and insurance right now; what happens if I can no longer work and am dependent on my husband and he no longer wants me? I know that a marriage is based on trust and love, but what happens when someone just simply doesn’t understand the disease and that the limitations aren’t excuses but really are limitations and are real?
I know there are times I have to tell my children I can’t do something, that I have to rest; I’m not sure my husband understands when I have to rest or can’t do something with the family or can’t get up / stay up late at night, or even have relations because I am too painful / too exhausted.
This is a hard part of RA to deal with, and is really hitting home right now. I wish I had answers, wish I could offer others some advice or peace of mind, but there just isn’t any for me right now.
I hope he does learn to understand and does right by you. Maybe your doctor could help him understand. Don’t feel bad about not having answers – many of our sitations don’t have easy answers – we just hang on and fight thru and sometimes just “survive” it when it’s bad. No shame in that!
When my husband and I first began dating, I had had RA for several years but was at a point where I could go hiking or snowshoeing (my RA at that time was mostly limited to my upper body – including an elbow replacement). We were active together. He knew about it and dealt with the occasional flare. However, this past year has been horrific for me and he certainly had been placed in care-giver mode (getting me in and out of bed, dressed, ALL the housework, etc).
Leading up to my hip replacement (8 weeks ago) was a struggle on our relationship as I was in so much pain, unable to do anything and therefore pretty darn unhappy. The replacement has certainly changed my life for the better and I can look back and realize how much of a test that was and just how strong we are together. I consider myself incredibly lucky to have someone care for me so much during that time.
Wonderful story, Stephanie. Thank you for posting such an honest, encouraging comment. I hope your hip recovery goes well.
wow, did this hit home. i’ve been through this already and i’m very fortunate to have reunited & married my one true soul mate! We honestly believe in our vows, especially “In sickness and in health”. NEVER think your spouse/partner can’t or won’t leave you. i worked for divorce attorneys as well. clients would say “buy we’ve been married for years/we have kids/i don’t have a job/i’m disabled/i need his health ins/i’ve always been a domestic engineer”, etc. nothing says you have to stay married to someone if you aren’t happy with any aspect of your marriage. i DO NOT agree, but that’s how it is. i pray for any of you who are going through this. feel free to inbox me for support. ♥
This is such an interesting topic. I see 2 main situations being mentioned here: that of being married and then being hit with the RA diagnosis, and that of having RA before meeting a significant other. I’m currently in my 20s and have had JRA since childhood, and I’m still in search of a romantic partner. Dating with RA hasn’t been too bad, since I am currently able to manage my disease on my own. But I would like to be with someone that will be there for me during those rough patches. It’s been my experience that though guys accept my RA pretty well, they aren’t sensitive to the fact that I might need help from time to time.
I think there is actually an advantage in being married and then getting diagnosed with RA – your partner already knows you, and RA becomes a challenge you can both face together. Having RA and meeting new guys means I have to initially downplay my disease, so as not to overwhelm and scare them away.
Either way, it’s not easy! Wishing all of you the best in your relationships.
Wow that would be hard, Lily. Thanks for sharing that side. I hope you find the amazing one for you – who can take truth from the start!
Apparently divorce is very prevalent when a spouse becomes ill. My husband was diagnosed with a brain tumor when he was 29. I was 27 and we had three children under 8. At no time since he was diagnosed did his illness, surgery, side effects, etc. cause me to consider leaving. I loved taking care of him. I was subsequently diagnosed at age 34 with Rheumatoid Arthritis. And for the last 11 years, we have taken care of each other. So I was shocked when a psychiatrist asked me WHY I had stayed with my husband through his illness? I sat there stunned for a few minutes before asking him to repeat his question. I said, ummmm, because he is a wonderful husband, the amazing father of my three children and I LOVE HIM!! He then said that in his experience more people leave than stay, when their partner is diagnosed with a long term illness. Im still not sure I believe that. I can’t imagine being that heartless. And now that I am sick, as well. I can’t imagine how it would feel to be abandon at such a difficult time:( This is one marriage that is only become more strong.
It helps to have support systems like RA Warrior!!!
Thanks for sharing, Kimberley. What a wonderful example! Yes, I think your therapist is right that it can be any illness – that is sad, isn’t it? That’s why the “sickness and health” part is in there in the first place.
There’s a flip side to the increased divorce rate after a diagnosis of RA, and that’s finding out that the very traits that so drove you crazy through 40+ years of marriage are now bonuses. My husband never liked long conversations planning our future. He didn’t want to mull over his emotions: he was a doer who either wanted to solve the problem, or, if it there was no solution, just move on. Although I can no longer take off on mountain biking excursions with him as I once did, he’s just as happy to take off by himself if I don’t need him at the moment. He refuses to have any conversations about how badly my RA has constricted his life. He really doesn’t want to deal with me feeling guilty, so I’ve learned not to feel guilty. That’s just the way it is, he says. When I careen across the living room floor, trying to get across the room by a route that weak joints have turned into an unintentional Charlie Chaplin routine, we laugh together. He’s one of the heroes, Rebecca.
I have to say I am married to a true HERO! He is truly my best friend and unfortunately at times my caretaker. June 3 we will have been married for 17 years and I have to say the thing that keeps our marriage good is our faith in God.
I was diagnosed with RA 10 years ago at age 32. I still work full time at a very stressful and demanding job and we have 5 children, 4 between the ages of 25 and 19 and then we are in the process of adopting a precious 7 year old little girl. I was very worried when we took custody of her 2 ½ years ago and how unfair it would to bring her into our home knowing that I have RA. I have to say that she has been a true blessing to us. There are many days I do not feel well and I will sit out in the backyard in my chair and just watch her and my husband playing and having a great time. Yes, I wish I felt like joining in but I get so much joy knowing she is happy and healthy and in a safe and loving environment. She too worries about her mommy and is the first one there to help when I have a flare. She is such a loving and caring child, which is why I think God sent her to us. She needed a safe and loving environment and I need her caring and generous spirit around me.
I am currently on Plaquenil, Voltaren, Methotrexate and a Remicaid IV Infusion every 7 weeks. Most of the time I can control my RA, however along with all the meds comes the increase risk of infection which I deal with often. Having a 7 year old coming home from school with the colds and viruses is a constant challenge for me. When I get an infection I have to go off the Methotrexate and Remicaid for antibiotics and then I end up with the RA flaring up.
I pray for everyone going through RA and wish everyone could have a supportive spouse like I have. Don’t get me wrong there are days when I know there are things he would like to do or places he would like to go and we cannot because of the RA, but he never makes me feel bad about it. One of the things that I admire so much when friends and family are planning things he is the first one to tell them we will be there if at all possible and I am up to it. He never makes promises and does not ever mind canceling or switching up plans for me. He is my Hero!
Hi Deanna,
really enjoyed reading your comment today. Thank you for taking the time. It is a good example that he helps run interference for you to others to help them take RA into account. Wonderful.
Kelly, I have been reading RAWarrior for many years now. I know the trials and tribulations you yourself have faced. You home school your children, one of which you are dealing with the possibility of having RA himself. You also have a young child “Roo” . You are very active in Scouts with your sons and very supportive with one son’s football activity. All of that would be quite a bit for a healthy parent to handle. You add your RA and all your travel for RA awareness, I personally do not know how you do it. In all these years, I’ve only heard you mention a husband once. Something about the beautiful camera he bought you for your birthday. Some of us have extremely understanding spouses, others have spouses that make our RA worse, while some have a spouse that cares and understands yet, they can’t handle the pressure. How does your husband deal with the days that you are bedridden? Is he helpful? Does he make you feel guilty? Or are you fortunate to have a spouse that is there for you? With all you have on your plate, I hope you have an understanding, helpful husband.
Cindy, this is the first opportunity I’ve had to reply. Although there are several comments ahead of this one and I haven’t looked over Facebook or email in several days, but it seemed important to say that there are some things in this comment that are not accurate and I’m sorry if that may contribute to any confusion. I’ll write a response as soon as I’m able.
There are some statements here that need to be corrected for other readers, knowing that few readers have read all 650 pages here.
I hope this time will be useful to clarify any confusion.
Homeschool:
Two of my children are college /jr college graduates. Two others are in high school, taking some of their classes at the community/jr college. Roo will be 7 in a couple weeks and doing school with him takes little time since he taught himself to read at age 4. Homeschool for us is not like it was with 4 kids in school before RA, over a decade ago with tennis and picnics. Homeschool now consists of sitting by momma on the sofa or bed or at the dining table. Pajamas, pillows are ever present. Not what anyone would consider physical work.
Scouts:
I got my sons into scouting about 5 years ago. In that time, I’ve attended TWO ceremonies held in churches near my home. I was driven there and sat in a chair for an hour and was helped to the car. That is not “very active.” It has made me sad, and I’ve written about how hard it is that some have not understood the reason that I’m not able to participate.
Football:
None of my sons have played football for at least 2 years. Tiger did attend spring training for 2 weeks this month, in preparation for try-outs next August. I picked him up a few times in my truck, just down the road. When they were little, I took the two of them to flag football practices every day and helped bring snacks. But after I got RA, I made it to fewer & fewer games & struggled to get to my chair & sit thru the game. They did Pop Warner 2 times & I only attended home games, a few blocks from home with someone to help me & I blogged about this, too.
That is not “quite a bit” to handle because I don’t go to scouts, they don’t play football, and I homeschool in sweats on the sofa a few hours per week.
I have not blogged for “many years” but celebrated our 3 yr birthday 2 weeks ago. I could spend an hour getting links to confirm the facts but that might be a waste of time. The archives show all the posts. And the pages are on the top menus or the footer menu.
Travel: also much less than is implied. Few trips with usually months in between when, as I wrote, my suitcase sits waiting to be unpacked.
2009 None
2010 – 2 meetings for the whole yr
October: my bff was my travel companion /assistant we went to New Jersey for 1 day. It was all on the blog. We had to get them to realize I had to have tickets for 2 and stay overnight due to the RA.
November: Blogged about it – Got procedures on spine & new pain meds & pred to prepare for ACR. Spent a whole week in bed beforehand to get the flare to subside as much as possible. Went to Atlanta with KB as companion. Had enormous amount of assistance which I bloggd about. Used wheelchair. Elevators. Missed a lot of meetings.
2011
Winter: none
Spring – went with Barb & KB to Phoenix to Natl AI Gathering of RA patients. Missed all “excursions” and dinners out because it was too hard. Attended 3/4 of meetings & spent evenings in bed w/ pain meds.
Summer – KB drove us to Miami – a couple hours away – for scientific meetings. No dinners out. No seeing the city. Nothing but sitting in meetings and resting in bed in between. Was in horrible pain due to swollen flared hand & other joints. I’ve blogged & spoken about it.
Fall – September – spoke in Phila. Nancy was my helper. Lots of accommodations as always.
October – Mayo Clinic meeting in MN. Again, blogged about how hard, but how important to be present as a patient.
November – ACR. Missed even more meetings than 2010. And had a very hard time. There were dozen RPF volunteers there.
Winter – none
2012 – Went to AI Gathering in Texas. Did no siteseeing or excursions again. Stayed in hotel the whole weekend. Blogged about the horrible pain of the 12 hr traveling day w/ delays & problems.
It can be a no-win. It is hard & painful & I do keep most of that to myself. However, blogs have been honest about how much physical help is received to travel even the limited accommodated schedule I’ve had. I only agree to speak when I have accommodations and assistance & I believe it will benefit patients.
Thanks for good wishes. There are private people (friends & relatives, husband & mother included) who prefer to not be on the blog. The blog has never been about me & that’s been stated many times. Few posts are about me. Occasionally, I use a reader as an example on the blog, anonymously and with permission. More often, I integrate news with trends from the hundreds of emails and thousands of comments from patients and care givers. Rarely, I use experiences from my own family as I did today with Tiger, when it seems appropriate. I hope this helps.
I feel that all marriages can end in divorce, but having the sudden realization that you will have to be a caregiver, can be shocking. However, the financial burden as well as the intamacy issues, can be an even bigger problem. Money and intamacy have been the biggest strain on my marriage, but 10 years after diagnoses and only at 30 yrs old we still want it. And that’s what counts! We were together for two years and at 19yrs old when I was diagnosed. It may be easier for us because we don’t really know another way, well mostly.
For me and my stbx, my RA diagnosis wasn’t the only cause of our split but it definitely was the straw that broke the camel’s back. It still causes me grief to think about his attitude, so I try not to do that very often. We stuck together through 14 tough years but the RA was a fatal blow to our marriage. Sometimes I am still really sad about that, but mostly I am grateful that I found out early on after my diagnosis that he just wasn’t going to be there for me. I’ve since met a really wonderful man who doesn’t mind the RA and who is great about helping me when I need it.
Glad it turned out for the best for you, Suzanne, and you have support.
Kelly, I believe it totally depends on the both people! If you are a woman with RA and have a positive outlook on life and see your RA as something you live with I think it is easier for a spouse to not view it is a burden. I think if you are more of the victim and your life revolves around your RA then I think that influences other people to see it as a negative aspect and a burden. Your overall attitude really teaches people how to treat you and respond to your condition. I try to draw as little attention to it as possible around family and friends so that when I really REALLY need support, help and compassion they have stores to draw from! I am lucky though and my RA is still very palindromic in terms of flares and I am not disabled or suffer any permanent joint damage yet. My husband has been there through it all from nothing wrong with me, trying to figure out why suddenly I have these crippling flares, to after diagnosis and learning how to cope. It is not perfect sometimes, especially if I am having a rough time with it or heavens forbid I am changing meds (that really stinks) but he seems to really find comfort and enjoyment in taking care of me when I need it. He hates seeing me suffer and does anything and everything to help from carrying me like a fireman up and down the stairs to picking up extra housework. I feel like some people are naturally more suited to the caretaker role than others as well as empathy. I feel really blessed that my husband has always been willing to do whatever it takes to help me and we often make jokes about when I get old and he has to take care of me, or if I’m not old just disabled due to my RA.
I really feel like the the combination of a good attitude about your condition and a naturally empathetic person are key to sustainability. Even on my worst days, I try to find humor about something like can he learn how to apply eye liner etc otherwise I think it would destroy me.
Kelly, I do not understand your reply to me at all. I’m not confused, I was just trying to say, with all you do along with your RA, how does your husband handle the disease?
Cindy
I’ve spent the past hour typing and refreshed the page to see your added request. I hope I explained I spend 90% of my time on my sofa as I always say. So I don’t have much that I do “with all you do along with your RA.” You’ve made several inquiries about personal matters now and I’m not sure why it’s so urgent that you know about these things. I’m sorry. He does prefer to not be on the blog, with a public job. We’ve lived in the fishbowl with a public job for many years and never had such inquiries before. I prayfully decide what to post and do my best. I have tried and cannot imagine this type of inquiry on any of the other sites /blogs I use or from any other public person.
Unfortunately RA was definately the reason for my divorce. I was diagnosed just 7 months into my marriage. We had been together for 8 years prior to getting married and once I was diagnosed I was upset,scared,and felt I would become disabled. I would try to discuss things with my hubby who would just seem to get upset and yell at me when I would talk about my concerns. As a result I seperated months later and ended up getting a divorce. Thirteen years later I regret it witrh every fiber of my being and not a day goes by without wishing I had done it different.
Julie, This is a bit late but, I just read this topic today. I think I hear some serious pain and regret in your last words. I do know that I do not know the whole story, or even a significant portion but, in general, it is very easy to look back and judge yourself harshly. My impression is that you were young and went with your gut. That is truly the best thing to do. If he can’t listen to you speaking of your concerns how will he be able to physically and emotionally support/assist you when the RA flares and worsens? Most times, when we look back on the path we didn’t take, we make it a much happier place. Sorry if I am sticking my nose in where it does not belong. It is hard enough to deal with RA let alone the added burden of past regrets. Take care.
when I was in university (back when the hills were mountains), I heard a disturbing statistic that in marriages where one of the partners becomes disabled, the divorce rate is 50% when the man becomes disabled and 90% when the woman becomes disabled. No wonder I was single for a long time…
A National Health Interview Survey (2009, I think) found that the divorce rate in marriages where one partner has a chronic illness is 75%. That’s significant. And disheartening. I do believe that it is possible to get through it together, even get stronger, but it takes a lot of self awareness for each partner in respect to their feelings and thoughts, as well as a lot of open conversation in a safe environment. Not too long ago, I read a book called Beyond Chaos: A Man’s Journey along His Chronically Ill Wife by Gregg Piburn. It’s a fantastic book, with a lot of food for thought that can be conversation starters for a couple. I interviewed Gregg and his wife Sherrie earlier this year (http://www.healthcentral.com/rheumatoid-arthritis/c/80106/150732/rel) and they are wonderful people. They make a lot of sense, have become a much stronger couple because of chronic illness, but it took a lot of work. Their story made me feel hopeful.
This was posted on my husband’s and my 8th anniversary. We’ve actually been together a total of eleven years. I have to say the poor man has been through a lot with me. I do believe that it does help that I was diagnosed very early (age two). This has been life for me, and I was lucky enough that he still wants to share all of it with me. While my RAD and Sjogren’s have gotten quite a bit worse, and I fall into a pity party every now an then, having him there always brings me back. All the nights when he’s carried me to the bath tub, spoon fed me because I couldn’t hold the utensils, lied to me and told me everything is alright, washed, brushed and braided my hair, rubbed vitamin e oil into my skin-I know I am more than blessed. I am spoiled. I am more than spoiled. I am loved. To the point that this article is offensive to me. I hate that all of these people have had to deal with this life without the love and companionship that I have in my husband. It makes me angry. I wish for all of you “the one.” The one that will still see the part of you that is still you under your bad days, and will help you to remember you’re under there somewhere. The one that will always be there whether you want them there or not. I wish you love – love from the infusion room.
the comment from my now ex that “sealed the deal” for me to know our marriage would be ending was made to one of my friends…he told her he was tired of me being sick … broke my heart~
all I could think was…”WOW, you think YOU’RE tired of me being sick?? sorry my suffering is such a burden to you..”
in retrospect I see it now as really what I knew all along, my RA forced me to draw a line and required me to put myself and my medical needs first (it’s my only chance to keep functioning)I have kids to consider and they get any and all energy I can come up with~ anything that brings me down or takes from that has to GO
Erica, i was sort of a bit taken back by what you said, although I know we are all at different stages of our disease and some have mild disease while others have severe disabling disease and anything in between. I dont see myself as a victim, and I do take a very positive view, I also cannot say that RA does not define where I am in my life because unfortunately it does. Until recently I was a high level executive for a large corporation…and in 6 months of aggressive disease I have been forced into medical retirement, and need the use of a wheelchair to go any distance as I cannot hold my cane for any prolonged period of time. I have used a cane at work for the last 12 months and had to plan extensively to manage my workload and associated travel and sometimes this involved my husband taking annual leave so he could accompany me as I could not dress unaided or drive the car. Yes I am positive and yes I persevered as long as I could but ultimately RA beat me and there was not a single thing I could do to stop it…does that make me a victim? I dont know…does that make me a burden to my husband? Absolutely it does…thank the Lord that he has accepted this as part of his vows when he said “for better or worse, sickness and health”. No amount of postive attitude could change that..and yes I look at life with a positive view…and I fight this disease with everything I have…but I cannot prevent myself from being a burden…having gone from a strong business woman to a frail, ill woman who has been admitted to hospital 10 times in 7 months and spends my days housebound for the main part… doesnt mean I play the victim…but I am a burden no matter how much I would like that not to be the case.
Dear Jeanette, I’m really hoping that your pain will be eased soon and that your doctors can help get this under some control so you can get some more mobility back. It’s wonderful that your husband there for you either way!
Thank you for sharing your experience with your husband who sounds like a wonderful person. I still see you as strong, having endured so much and continuing to fight! From what I’ve observed, most of us are that way. We don’t want to be seen as victims or called “sufferers,” even though sometimes, it’s probably appropriate.
I have a feeling that you and Ericka agree more than disagree. I just re-read her comments. The key for us to be able to provide any support or information to each other or visitors is that we all realize, like you said, that we are not all in the same place with our disease. Some need more help, unfortunately.
It is easier to hide RA when it’s still Palindromic as Ericka said hers is. And it’s hard to imagine being completely incapacitated until it happens to you and she’s working hard at staying positive. But, here’s one thing that we are very similar on: trying to hide the RA and make it as “small” as possible & be as strong as we can. A survey of thousands of women with RA showed most try to conceal their pain which most said occurs daily in spite of treatments. Here is some more on that: https://www.rawarrior.com/how-pain-affects-the-lives-of-women-with-rheumatoid-arthritis/
Jeanette, I think maybe the word victim is the wrong word to use, as it tends to have negative connotations. I am truly sorry that you’ve had such a struggle with RA, and I am glad that you have such great support. I think that fighting and staying strong make you NOT a burden! I know perfectly healthy people who are a burden to be around just because of their attitude. In the very beginning before I had a diagnosis or medications to help, that feeling of being incapacitated and dependent were almost worse than the pain. I am only speaking to my personal experience with RA, and staying positive and not letting it get me down mentally are very important to me.
I worry about this a lot. Our marriage was stressed long before the RA dx. He is the breadwinner in the family, while I stay home and homeschool or 2 special needs kids. In the last 2 years, he’s slowly had to take over most of the housekeeping and cooking on top of the yard work and working a full time job. Money is tight, the kids’ needs are getting beyond more and more complicated, and because of the physical damage from the RA, I’m not able to provide the intimacy I once could. We’re in our 30s and it’s bad to say, but I can understand why he would want out. We love each other, but when I think of the rest of our lives like this, I feel awful for him.
We do what we must, whether it be working full time or writing a blog. It is like this with all chronic diseases. we could be tethered to a dialysis machine three times a week, or to insulin and blood sugar checks, seizure meds, or frequent labs to make sure our blood is thin enough to keep a stroke at bay. It is our new reality and most days we can deal with it. Some days we wonder why us ? Our advantages …our age, we are often young enough to understand and research our diagnosis. Elderly onset of some diseases leave families confused and seniors having difficulty making appointments and comprehending the crazy inroads of medicine. Be glad we can figure out some of this stuff. My aunt had to catherize herself five times a day, she learned this feat at age 65, but that kept her in her house and out of the nursing home. Her husband was partially blind, he could not do that for her.
Marriage and committed relationships are so difficult, we all expect so much of each other, it rare to see truly equal partners. Being in pain nearly every day and the restrictions the fear of pain place on us change us in our souls. Some of us fight it tooth and nail, some wallow in the depression it leads us to, some are trying to find a better way. Thank God for the computer and our bonding. When my son was diagnosed with autism in 1987, I couldn’t find a word about it , excluding the horrific idea of a ” refridgerator mother” ( the mother was indifferent and aloof and made the child autistic ). We need to support everyone’s effort, including the spouses who couldn’t handle it…at least they are honest with themselves and the RA person. Not every man or woman can do the things we need to do. Of all the things I have given up…long walks, dancing, bowling, cooking and baking…I would not give up intimacy with a partner, I would find a way and I would advise any of us still in a committed relationship to do the same, try some wine first, find a book …something.!
…I have my number one priority, to work, so I can support my sons, they need this from me, I am sole support for them. The divorce started one year before my diagnosis, however the symptoms in retrospect, started three years sooner. It explains why I couldn’t be happy in the marriage, ,although, it was not my idea to divorce.
We are not alone. It is hell getting old; damn reading glasses, those lovely little pads for when we laugh too quick, hot flashes, weight gain at the sight of a potato chip, and poor sleeping. We are lucky to live in a time and place that has some medicine to assist. I remember the RA patients from the 70’s who came in vomiting massive quantities of blood, as a result of the aspirin…the only treatment they could afford that even slightly worked, a bottle of aspirin a day for years and years. It was so sad, so hopeless. We need to take care of each other, on the blog and in real life. Spouses may stay, may go, I cannot worry about them…they will need someone to care for them someday too. There is also research that will tell you the rate of divorce for parents of kids with autism, kids with cancer, adults with cancer …etc. The only truth is that no one gets out of this life alive. Be kind , laugh out loud, be glad it isn’t worse…my pain is worse than your pain is a terrible contest…I don’t want to play. My house isn’t all that clean but there’s food and love and charity. The best things in life are not things and hopefully with us all working together we will find better ways to get relief”
RA was most definitely a contributing factor in my divorce last year. I was married to an incredibly selfish guy whose wants and needs always came before anyone else’s. During my onset, the worsening of my condition, being forced to stop working (6 months after the doctor told me to stop while hubby was telling me “you’re just going to have to learn to suck it up and deal with it”), moving in with my parents, etc., he couldn’t have been more unsupportive. His disdain and lack of concern for me and my health became more and more obvious until I found out that he was…shall we say…looking for greener pastures. At that point, I realized that I would be much better off alone than with someone who had such little regard for me and I kicked him out and filed for divorce. Even now, over a year later, my “disease”, as he calls it (and yes, he puts it in quotes) is his favorite weapon to try to hurt me with when we have an argument.
After we separated I didn’t think I would be able to trust anyone again and I certainly didn’t imagine that anyone in their right mind would be willing to take on a woman with three young children and RA. But now, I’m in a wonderful relationship with a man that has been a dear friend since we were in middle school together. He goes out of his way to take care of me and always makes it clear that I come first to him. That’s new to me and I’m still getting used to it. But it proves that there are some really great men out there. 🙂
Finding out that “RA patients were five times less likely to remarry than people with arthritis/osteoarthritis” is devastating as I am recently divorced after a 20 year marriage. My ex really believed that I wasn’t doing enough to help myself, and that is why I wasn’t getting better. If only I would exercise, eat right, lose weight, keep to a sleep schedule etc etc. I felt like my life was a huge catch-22.Sleeping is a really difficult problem when you are in pain, take medications like prednisone that disrupt your sleep, and have sleep apnea from gaining weight and loosing muscle tone. When we married I was thin, active, attractive, and had a career that I loved. Within four years I had to go on disability, I gained 50 lb from the prednisone, and got the characteristic moon face and buffalo hump. I was not attractive or thin anymore, and I looked as if I had aged ten years. In the first year after I was diagnosed, I broke bones in my feet 3 times due too instability caused by deformities.My RA went undiagnosed for many years until a fertility treatment sent it into super-overdrive, and I demanded a rheumatoid factor test from my primary care doctor. When I called to ask my results after not hearing for several weeks, I was told it was negative. When I asked for a copy of the lab results, I discovered that my rheumatoid factor was positive as well as my ANA. When I asked my doctor whey he told me they were negative, he said “your sed rate wasn’t elevated and your hands look fine so it’s a false positive.” Unbelievable!! Even though my feet were severely deformed, because my hands were not yet affected my doctor refused to consider RA. Luckily I did find a wonderful rheumy soon thereafter who was absolutely shocked that there had been any trouble making my diagnoses. I had overwhelming fatigue, depression, and pain. We had a toddler and a newborn that I was unable to care for without a lot of help. My ex had lost the wife that he married and to top it off the majority of the household responsibilities fell to him. I could understand, and still understand what a genuinely crappy deal it was for him. The thing I couldn’t understand was his inability to even try to put himself in my shoes.He was sure I was lazy, and I was just using RA to make him do all the work so I could sit on my butt! He never went to any doctor’s appointments or did any reading on the disease-he just stubbornly held on to his misconceptions. I felt like I had to hide my medication from him because there were so many bottles and he accused me of “always trying to solve solving my problems by taking a pill.” He was angry at me all the time, but some how we did not get divorced until I discovered he was having an affair this last year. I was devastated when the divorce was first happening, especially because I don’t have any friends I can rely on anymore. It is so hard to keep up friendships when you have so little energy. Unfortunately I put what little I had into my husband and kids. I love my children dearly, my oldest is off at college now and my younger one will be in a couple of years. I am in a really bad position now. I let my friendships peter out and now that my husband is gone, when my children have all spread their wings(as they should) I will be all alone. This REALLY sucks. Because I am introvert, I prefer to just have a couple of really close friends. But being sick makes you needy, and new friendships don’t respond well to lopsided relationships.I’m so discouraged because I don’t know how to even begin rebuilding my social support system. . Maybe the point is that I would like to warn other married RA’ers to make an effort, no matter how difficult it may be to find the energy, to nurture at least a few friendships. I put all my eggs in one basket, so to speak, and now I have none.
This is the most interesting information. I am 33 years old and was diagnosed with RA last year, so this is all new for me. I am very blessed to have a husband who understands, and is very patient with the disease. He is just as curious as I am to find out more about what my triggers are and what things will help with lessening inflammation. I also follow you on Facebook and really appreciate all that you put out.
I feel terrible about the things you’ve been through & I thank you for sharing with others here so they can learn about how these things happen to people.
I’d hate for you to lose hope by the statistics I reported in this article though!! That is only a statistic and there is no way to know what is possible for any one of us in the future. Hopefully someone as caring as you would be one of the lucky ones who may remarry anyway someday no matter how devastating the statistics are. For now, I hope that not living with someone who is “angry all the time” will help you to feel at peace and new friendships will begin to grow.
I was diagnosed with RA when I was 21, just one month after my newborn baby daughter died. A month after that my husband decided he didn’t want to be married to a cripple. I remarried in my 30’s, had two wonderful kids. That marriage lasted over 20 years.(my 6 year old daughter learned to change her baby brothers diapers when she was 6 years old} Then his work took him out of town a lot and I couldn’t keep up with things at home, and he found someone else. Both of my kids had to grow up really fast. They were both up to the challenge. My daughter is a school teacher and my son also has a great job and is a 2nd degree black belt karate instructor. My healthy exhusband died about 10 years ago.My children both take terrific care of me! I just turned 63, and I think I have a few more good years left. After 43 years, and various joint replacements.I feel like I kind of rattle when I move! Going in soon for a hip replacement. My son even found me an assisted living apartment down the street from his apartment. I thank God for them everyday!!! And I thank God for my life!!!
Thank you, Cheryl. What a beautiful perspective. Thank God for your kids – and mine.
My husband and I have been through so much together that thr RA doesn’t seem like that big of a deal. We got married when we were both in our early thirties. We were unable to get pregnant went through two years of if treatment, lost twins at 22 weeks gestation, received a RA diagnosis four months later. We did a second if attempt and I carried another set of twins to 38 weeks who were born healthy. At 2 years of age my son was diagnosed with autism. He has severe autism and s nonverbal. At 7 years of age my daughter and me were both diagnosed ADHD Around this time my husband was diagnosed with asperger syndrome. Yes me having RA is stressful but so is our sons autism. according to the studies we should have been divorced a long time ago. I think the biggest problem is we get so focused on our sons autism that we both forget that I’m somewhat disabled also. Our biggest problemis that I am one of those people who do it anyway despite the pain. Since he has aspergers he doesn’t read the signs that I am in pain. He thinks that because the house is clean I must be ok. It gets frustrating that I have to spell it out for him as to just how bad I am feeling. He gets frustrated because he says he can’t be sick no matter how sick he is I am more sick.
Kathy, I am so sorry to hear about all that your family has been through. I think it is wonderful that you and your husband are still together. My marriage failed after 20 years. I just wanted to tell you that it is not just partners with asperger syndrome that can’t read the signs of when we are in pain or not feeling well! Not only could my husband not read the signs, when I spelled it out for him he still didn’t believe me. I think most people can’t read the signs because we are so used to having to go about our daily lives despite the pain and fatigue we feel. I often stop to think on a particular day, that before I had RA if I felt as bad as I did that day, I would have been in bed with out feeling the least bit guilty. But now that feeling crappy is an everyday occurrence, I have no choice but to keep going most of the time or else I would have no life at all. This is very confusing to other people. My husband also expressed to me that he couldn’t be sick because no matter how sick he was, I was more sick. My point is that some of what you are experiencing is probably typical for many marriages where one person has a chronic illness. I wish you all the best-you sound like a very special family
Thank you Kelly. Please don’t worry that the statistics in the article are making me feel worse. The more I have thought about it, the more it has actually helped to realize that I don’t have to blame myself so much for not being able to make my marriage work. One thing is clear, marriage that involves an unpredictable illness like RA is hard! I hope that someday I do find a COMPASSIONATE, LOVING, PARTNER, to grow old with. But in the meantime, I am actually enjoying my independence.I have been married or living with one of my two husbands all but 4-5 years between the ages of 19 and 50. It is nice for a change to not have to worry about making someone else happy. I really enjoy being alone as long as I don’t worry about being alone for the rest of my life-especially in 10 or 15 years.
Being recently diagnosed with RA, I wanted to share a positive twist on RA & Divorce. I was already divorced when I was diagnosed with RA which set in following a mugging at a local grocery store. When I experienced disability with the onset of the RA, my ex-spouse moved back in to help me.
Better than living with this monster I have . I woke up with a locked jaw or TMJ among others ( I have been in a full flare for about 4 days) and made the mistake of complaining about her leaving the house for 6 hours without letting me know ( I had called out the nest i could for some help getting out of bed and ended up getting hit in the jaw….. and her trying push me down some steps… good thing I was using two canes that day. Merry Christmas huh?
I am using that as an example( although a real one. Everyone wonders when they are young and in love what life will be like when the looks and sex fade. well RA gives people a chance too see that fully. 26 years ago I never envisioned what a monster what my wife really was. Now over the years I have gotten a good idea from the times I or the lids were sick and really needed a mother or a wife. I can count the time she apologized for something on one hand. But me being weak now has emboldened her. a month ago when she was complaining about something i couldn’t do by myself and needed her help. I think I was moving some furniture for her. These were her parting words as she walked out the door. I am smarter , I am prettier, I can work harder and I can fucking walk.
Sometimes its just the monster we live with. I am serious I know of ONE time in 2 years my wife has actually said or implied that I should get off my feet and that is when my ankle was spilling out over my shoe and my leg was blue .
I would divorce her in a second if I had a place to go and way to reliably support myself. For 26 years I have supported her and her kids in a very good lifestyle .. Now they can support me
I am sorry to hear such stories about these spouses. It is hard enough to have RA without the pain of being betrayed by the one you trust to stay by you. I would have been devastated by their behavior.
My husband and I have been married for 31 years, really we were babies. Actually in our 20s. He had a very difficult job and travelled often and I left the Air Force to stay home with the kids. In his 40’s he suffered a major heart attack and we discovered he had very unstable{brittle} Diabetes. He was medically retired in 2006. In between the onset of his illnesses and retirement our children grew up and left on their adventures. Except a daughter with Bipolar and Schizophrenia. She was on drugs {not prescribed] and had a baby boy who ended up with us and with Autism. So, I was a RN with good benefits and loved my job. I had a diagnosis of RA but, it was pretty well controlled with Celebrex and I slowed down some on activities outside of work. I ended up leaving the Intensive Care unit and took a desk job because of all my aches,pains, and tiredness. Finally, a MD I worked with said enough, my hands and feet were a mess. So, after many trials with many meds I am still being adjusted with meds,have much pain,exhaustion,and terrible joints.
I need to have a talk with the one in charge of the universe and insist that there should never be two, or more, debilitating illnesses in one family. It really makes things difficult.
I keep insisting that my husband is the sick one. He has now explained to me that its my turn. I have had to retire which dumped the income. Fortunately for us I had great insurance and my employers let me continue it at the employee rate. My spouse is amazing he takes over most household tasks, helps me with anything I am unable to do and listens to me . Our son is now ten and actually has adapted pretty well to the changes and limits in our lives. I used to say ” It could be worse” but, my husband insists that i stop because when I say it something worse is added. So, sometimes life sucks but its the only one we have so we hobble through and realize that yes, it could be worse, we could be doing this alone.
So I wish for everyone to get well but, if not, to have a loving partner,friend, or family member to help them along
Sorry this is sooooo long. You my leave it out if it is too much..
I have had RA for about 4 to 6 years now. I was diagnosed about 2 years ago. I’ve been on remicade and orencia with no positive effect yet. My wife left me 2 days after our 12th anniversary. I don’t know if it is the disease that altered my behavior or the fact that i’m a firefighter and work 24 hr shifts. Firefighters have a high divorce rate due to the shifts (24 hrs alone without her husband) fatigue and all the crap that we see and do in our job. Before i was diagnosed i drank to deal with the pain, and i’ve had a few bad reactions to meds or meds and alcohol. Sometimes i’m glad she left me and might find someone without all of this crap in their life. Missing my kids is the hardest thing i’ve ever had to deal with.
I was diagnosed with RA about 6 months ago, 2 months ago I started dating this wonderful man, who if I didn’t have RA I would be saying that I would be spending the rest of my life with. The problem is, I do have RA and I have no idea what the future holds. He says he wants to be there for me, and that he’s not scared of what the future could bring, but he has no clue. I was married before to a wonderful man who I thought that I would be with forever. He had an accident and received a TBI (traumatic brain injury)I took care of him for 7 years but he just became more and more hard to handle. It was like being married to an angry obstinate 10yr old who wants everything his way. He actually took all the money out of the bank and divorced and I just let it go through. Now he is constantly trying to get me to marry him again. The point to all that was is that I was tired. It was like fighting an up hill battle all the time. I don’t know if I can do that to another person. When I was first diagnosed and I started to take the MTX after a couple weeks I felt fine, still able to do just about everything, but for the last 3 weeks I hurt all the time. I think I thought that RA wouldn’t affect me much and I shouldn’t let it change things, but it is and now I am scared to move forward. I knew the moment that I saw the new guy that he was the one… we started our relationship “in the middle” not having to though all the beginning nervousness or worries, it just was…. but how do I let him give up part of his life to be a care giver to me, I know that, that is a sometime in the future, but who knows when. I know how hard it is to love someone but feel just so overwhelmed and alone trying to take care of them and I can’t do it to him. Any thoughts from the care giver would be appreciated.
Hello Ann. I was married in 1972, I was 22, my wife 20. I was officially diagnosed with RA at the age of 30, but had all the symptoms of RA at 25 but had no idea what this disease was at the time, but I soon found out in a hurry. I will be turning 64 this February and have been married for 41 years to the same wonderful woman, the greatest majority of these years dealing with this awful disease. There have been so many ups and downs during these years that I cannot write about them all in this post. I fully understand your concerns and all the questions that run around in your mind regarding your marriage and the possible thoughts your spouse may have about this disease as the marriage progresses. I found the best approach from either partner is to be honest and up front with their feelings, no matter how difficult some of these may be to bring up. Its better to deal with these problems head on, rather then to let them fester. At least that way you both know where the other person stands regarding all the issues associated with this disease, and will less likely be blind sided by your partner if a major problem arises in the relationship. People forget that the disease is just as hard on the caregiver as it is with the person having the disease. Like I mentioned before Ann, I have to much to say about my journey with RA to write it all down in this reply, but if you have any questions you would like to ask me, Id be more than happy to answer them. I hope you have a long and happy marriage.
I’ve read on various RA blogs about couples splitting up after one is diagnosed. It breaks my heart. I think that there are already some problems (in many cases) and the RAD diagnosis just brings things to a head. It’s not bad enough that we have to have this nasty disease and all it brings in our lives but to lose your spouse/and or family as well must be almost impossible to bear.
I am fortunate to be married to a man who is very supportive and even then, it isn’t easy at times. When I think back to my earlier years, I am so grateful I didn’t have to deal with it then. My ex-husband was very unsupportive of another medical issue I have and I think he would’ve kicked me out or left himself if I’d been diagnosed with RA then.
I don’t know what else to say except that my heart goes out to all of you who are in this situation. I hope and pray that something better is in store for you after the pain and heartache.
This post is old, but it touched me so I wanted to comment. My husband is my hero. We were together for 7 years before we were married. I was diagnosed in our 7th year together, a few months before our wedding. However, I had been sick for about a year so we knew the diagnosis was coming. My husband has never let my illness get to him. He doesn’t treat me any differently and he helps with anything I need. I will never forget our honeymoon. I was very sick because I wasn’t taking medicine yet. I was too scared I would have bad side affects that would ruin our wedding. I was flaring so bad I could not sit down at all or really do much of anything. I have undiff spondyloarthritis, and my si joints flare badly at times. My husband made me dinner in our room because I was on a strict diet to control my symptoms, so we had to make all our own food. We stood and ate dinner together on the kitchen counter because I was too sick to even sit at the table. He didn’t make me feel bad that I couldn’t even sit down to have a normal meal together. He just said it didn’t matter, he would just stand and eat with me. Such a little thing, but it meant so much. No judgement, he just wanted to be there for me, and it was okay that his new bride could only stand for a little while at a time and could not sit even though we were just in our 20s and starting our life. That’s how he always is, and I am so grateful and thankful. So, to everyone who had a spouse leave them just know you can find people out there who will get it and be there for you.
I would agree that RA is a huge contributing factor to divorce. I’m living proof. Divorced 2 years after my RA diagnosis. My x didn’t want to deal with it. And he couldn’t cope with me not being able to do things any more. Oh well.. If rather be alone than with someone who lets you down when you need them most. As far as remarrying .. I don’t know. I’m pretty scared to trust.