Wednesday, May 30, 2012

RA & Relationships

By Kadie Monday, March 23, 2009

Does anyone have advice on how they have dealt with being in a relationship while having a chronic and variable incapacitating disease? My relationship is relatively new, just a year, and she is over 10 years younger than me. Now, during a flare, I feel ANCIENT compared to her, and am so afraid of holding her back from her life. Our biggest problem has been my fatigue, but she's also afraid to touch me because almost every joint is swollen and sore. 

 

I probably start MTX today, which I hope helps return my life to near normal, though now we have to deal with the horrible side effects. 

 

We have discussed marriage. But is it fair to marry someone who has their whole life in front of them, especially when I read such horrible statistics about RA? (The latest was in the Arthritis Foundation "Good Living with Arthritis" that said that half the people dx with RA are unable to have a full-time job within 10 years.)

 

Even without questions of the future, how do you deal with the daily ups-and-downs of RA? Every day is different with my energy level and pain. I could have a couple good days where I feel almost normal (as long as I get enough sleep) to days where I feel like I've accomplished a marathon by taking out the garbage. She understands sick. She understands well. But the constant back and forth must be, and is, extremely irritating to other people.

 

 

3/23/09 1:05pm

Hi Kadie,

I was diagnosed last April and went through that "wait forever for an appointment" drama, too. Not forever, and not for long. Let's hope for some good drugs working to get you going soon. An important thing to always remember - don't believe everything that you hear - or read. RA has kicked my butt - but I'm determined to continue to kick it back. We're duking it out big time right now.

 

You're so fortunate to be in a relationship with a caring partner. Life is full of surprises. I have been on the receiving end of bad surprises for the last few years. I couldn't see the black cloud, but I knew that it was over my head. It hasn't been easy for me to keep positive and maintain my sense of humor - but I really don't like the alternative.

 

 

Fingers crossed (well, kind of),

Karen

 

 

 

 

 

3/23/09 1:05pm

Hi Kadie,

I was diagnosed last April and went through that "wait forever for an appointment" drama, too. Not forever, and not for long. Let's hope for some good drugs working to get you going soon. An important thing to always remember - don't believe everything that you hear - or read. RA has kicked my butt - but I'm determined to continue to kick it back. We're duking it out big time right now.

 

You're so fortunate to be in a relationship with a caring partner. Life is full of surprises. I have been on the receiving end of bad surprises for the last few years. I couldn't see the black cloud, but I knew that it was over my head. It hasn't been easy for me to keep positive and maintain my sense of humor - but I really don't like the alternative.

 

 

Fingers crossed (well, kind of),

Karen

 

 

 

 

 

3/23/09 1:11pm

fingers work so well I clicked twice.

Lene Andersen, Health Guide
3/23/09 2:10pm

An important part of managing well with RA, whether it is at work, life in general or in relationships, is to get your disease is treated. Once your RA is suppressed, issues of fatigue and pain will diminish, allowing you to relegate the disease to muttering in the background. I'm glad to hear that you're starting on meth today - it usually takes about 6-8 weeks to really kick in and while you wait for that to happen, you may want to talk to your doctor about bridging the gap with e.g., prednisone and an anti-inflammatory like Celebrex. It is quite likely that you won't have "horrible" side effects - I have heard of people who have managed well for years on methotrexate without any major side effects. Personally, I took it for several years and had a bit of woozyness and fatigue for a few days following the dose, as well as some stomach upset, which I managed by eating a bland diet for a few days. Some people experience hair loss, but my hair just got more curly - which I considered a benefit! - and that's stuck around even after I switched to another medication. I wrote a post last year about managing medication side effects and you might find that helpful. You can also check out our area for people who are newly diagnosed for articles and tips on how to live with RA.

 

About the horrible statistics about RA. They are not necessarily true anymore. The statistics are based on the old treatment, before the Biologics (Enbrel, Humira, Remicade) which are medications that have completely changed the prognosis of the disease. Because they are so new, we simply don't know what the future will hold, but it is quite likely that it is a much brighter picture than it used to be. These days, methotrexate is on the lower rungs of the ladder of treatment for RA and although it may work very well for you for a long time, there are other options that very likely could keep you living a relatively normal life for decades. But - and I warn you, I'm about to get opinionated - even if you lose your ability to work full-time (and by the way, you may want to read one of my recent posts on working with this disease), does that mean you have no more value as a person and a partner?

 

We are more than our jobs, more than our ability, more than our disease. To say that it wouldn't be fair of you to "hold back" your partner due to your illness ignores all the other things she loves about you. The fact that you have RA, are in pain and are tired doesn't negate all the other wonderful things about you and doesn't mean that you don't bring anything to the relationship. Every relationship develops its own rhythm and distribution of responsibilities - so your partner may be the one who does the more physical chores around the house and you're the one who deals with e.g., paying the bills. There are relationships out there with two perfectly healthy people who find the same distribution of responsibility, based on what they enjoy and what they're good at.

 

Considering not marrying your beloved to "save her" from a life of drudgery and caregiving - because that's what you're afraid of, isn't it? - is treating her as if she is not an adult who knows her own mind. Don't take this the wrong way - I completely understand your thinking, have in fact been there myself and after a lot of thinking, I realized that I was making decisions for another person. A person who loved me just the way I am and had no problem taking on the physical baggage, just as we all take on each other's baggage and quirks when we enter into a relationship. In the end, I decided to respect that person's intelligence and free will and allowed myself to be loved. Another reason you may be hesitating could be because you're afraid she'll leave you if it gets worse. And it's a valid concern, however, statistics show that women are much better at coping with a partner's chronic illness than men are, so you're ahead of the game there! Smile There are many reasons why a marriage might split up down the road, most of which have nothing to do with illness.

 

Once your RA is suppressed, the roller coaster of sick and well will even out, but you'll still likely have some days that are not exceptional. You learn to live with the unpredictability, you learn about pain management and living within your limits in such a way that you don't tire yourself out, needing days to heal, but can keep going, perhaps doing a little bit less every day, but able to live your life most days. It's trial and error, it's about paying attention and having patience while you figure it out. Last year, I did an interview with M.E.A. MacNeil, author of The First Year with Rheumatoid Arthritis, which is a terrific book that can help you get a handle on all the different aspects of life with RA and I highly recommend it. I would also recommend that you and your partner consider counseling. Adjusting to chronic illness can be difficult, both for the person who has the illness and for their partner and having a therapist or counselor guide you through that process can help you develop coping skills for the rest of your life, talk out the issues and fears around your illness, as well as give you a closer bond.

 

Living with RA is not for the faint of heart and in many ways it gives you as much as it takes. It gives you strength and the knowledge that you can do anything, it gives you compassion and the ability to adapt to change. Those all skills that you can use in making your relationship stronger.

 

As long as you keep talking with each other, keep working at the relationship like everyone else does, RA is just another thing that needs to be handled. RA is part of what you are, but it isn't who you are. Your partner loves who you are. Take the leap. Trust her, trust yourself and have faith in the future. Because the future will be there no matter what you do and what it'll look like is completely up to you.

 

(sorry for the length... got a bit carried awaySmile)

 

3/24/09 6:25pm
My husband and I have run into some speed humps! In the beginning I tested his strenght, having him give me my shots and going to doc. apps. showing him possible outcomes of what could be, and He didn't run! There is something to be praised for someone who sees a tough path and willingly walks side by side with you. Then after two years I started to see how some days it really affected him mentally, that he focused on it and it saddened him to have to see me in pain and slowly deteriate and there is nothing he can do to stop it. So I Would tell and Yell to him "leave", (how can I put someone I Love through this) I felt that I was holding him back from having an exciting and fullfilling life when some days aren't spent living but just coping. I have issues with doing Everything Myself since I have been on my own for so long, When he would try to help with things I get Mad and Yell and thats not just twards him thats in general when anyone tries to step in and HELP! Through Therapy I am learning that I can't do it all! And He Loves Me for my Strength, Compassion, Honesty, Determination, Inteligence, and LOVE, despite my physical Shortcomings! So We Talk every night about our feelings about every aspect of how these issues effect our attitudes and actions! Keep the Communication lines open! And know that anything worth having takes Work and Commitment. So... it is Better to Have LOVED and LOST than to have NEVER LOVED at ALL! What will be will be and you just have to trust that it will all work out the way it's soupposed too! Lots of Luck in Love and Life! P.L.U.R.
Anonymous
Shelly
3/27/09 1:55am

Dear Kadie,

 

My partner left me a year after I was diagnosed with RA/Lupus.  In retrospect, I realize her leaving was mostly a result of my attitude and response to my illness at the time.  I was very bitter and angry at having my life changed so drastically by this disease.  In a short period of time I went from being a very independent woman to being dependent and resentful, struggling with my difficulty asking for and accepting help.  I was in excruciating pain 24/7, became severly depressed and took it out on those that I loved the most, her and my beautiful twin daughters who were 14 at the time.  I was convinced that I was going to die and most days was in so much pain that death would have been a relief.  I became, what I would consider emotionally abusive, and I could not see it.  The high doses of steriods did not help matters in that respect.  They made me irritable, anxious and I could not sleep. 

 

The biggest mistake I made was not asking my family members and other friends to help us.  My pride got in the way.  I took her for granted and she became overwhelmed, finally resulting in the love of my life walking out one day while I was at work. 

 

My advice to you is to let her know every single day how much you appreciate her and all that she does.  Expand your support network and include family and friends so she gets a break.  Get individual therapy if you are having trouble dealing with grief or depression associated with your illness and how it changes your life.  Ask her to join you in therapy if there are issues that need to be worked on between the two of you.  Do not let your illness become the focus of your universe.  She got so tired of hearing about it everyday.  Find others to talk to about your research, your symptoms and your feelings, but include her.  Most of all, don't forget to make time for fun in your life together.  Yes, things are different and it may take some time for it to get better, but make the best of even your worst days.  And last but not least, understand and be prepared if she can't handle your illness and watching you get sicker.  Some people just are not strong enough and that is not a reflection on you.  

 

It has been over six months since she left and my life will never be the same.  My disease is still not under control despite trying methotrexate, steriods, NSAIDS, narcotics and now my second TNF blocker.   I have not given up on getting better and I have not given up on love.  I do believe that things happen for a reason and I know that there is someone out there who will love me for who I am despite the fact that I am sick.  When she does show up, I will not make the same mistakes again.  Good luck to you, my friend.           

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By Kadie— Last Modified: 12/21/10, First Published: 03/23/09