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Tbackpain1
01-20-2009, 10:52 PM
From Medscape- http://www.medscape.com/viewarticle/586288?src=mp&spon=25&uac=88973PT

How Do Couples Cope When One Partner Has a Chronic Illness?
Posted 01/13/2009

Colin T. Son

Author Information

The Internet has played an important role in creating an informed and empowered patient population. Blogs, for example, are oases where patients can exchange information and experiences.

One particular patient blog, In Sickness and In Health http://http://www.insicknessinhealth.blogspot.com/, has a unique focus. The blog's author, Barbara Kivowitz, wants readers to understand that chronic illness is rarely, if ever, faced alone. Rather, it touches the lives of everyone around the patient, especially a significant other. She should know, as she has gone through it personally. Ms. Kivowitz recently described the difficulties that couples often face in dealing with chronic illness and shared her advice, based on her own experience, for dealing with those issues.

Colin Son: Dealing with illness as a couple is one of the main topics in your blog. What do you think is the single most important piece of advice that you can give to a couple dealing with a chronic disease?

Barbara Kivowitz: Surprisingly, the topic of couples and illness is one that has not received much study or attention.

When you're in a relationship and serious illness hits one partner, both lives are dislocated. The changes are profound ones. Illness becomes the uninvited third party in the relationship and inserts itself into some very tender places: into the image partners have of each other, into the activities and routines that the relationship depends on, into the kitchen, and into the bedroom. Doctors, drugs, hospitals, and healers become part of the substance of the relationship. Illness gets to make decisions that once belonged to the couple -- decisions about work, travel, finances, and family. Pain and exhaustion take precedence over desires and chores. What was once a relationship of equals often becomes one of caregiver and patient.

The question that is central to my quest is: How can a couple achieve a new kind of balance, one that accommodates the reality of the illness but also maintains a balanced partnership?

The key is communication.

The most important advice I can give couples dealing with illness is to talk to each other openly and honestly about your experience of the illness. Talk about your feelings and ask for what you need and what you don't want from your partner. Too often, without communication, the well partner comes to see the ill partner as not trying hard enough, and the ill partner comes to see the well partner as just not understanding. This can foster resentment and distance. Communicating recreates the connections that brought the couple together in the first place and builds a stronger foundation for both people to stand on to deal with the illness together.


Colin Son: Can you tell us a little of your own story? What brought you online as a patient?

Barbara Kivowitz: Prior to the onset of my pain condition, I had been a business consultant, writer, and psychotherapist. Richard and I loved adventure and had taken a year off to travel around the world. All of our vacations were built around hiking and mountain climbing. Illness upended our world and left us floundering.

Like many other sufferers, I went from specialist to specialist to find a diagnosis and treatment approach that could offer me a livable life. Richard became my anchor point. His scientific mind and problem-solving skills often helped me find a path out of my confusion and fear. His kindness and love could, at times, lift me above my pain. He took on all the household responsibilities I could no longer do. And, while he was doing all of this for me, he was living in his own hell, the hell of having a wife who was slipping away to illness.

The couple relationship is an additional casualty when illness hits, but it can also be a vessel for healing. I began blogging about couples and illness because I found little on the Internet about this topic and wanted to share my experiences and learn how other couples cope with illness. I have learned from and been moved by the stories of despair and of renewal that I have heard from readers of my blog.

Colin Son: How has your time as a psychotherapist shaped your experience with your illness?

Barbara Kivowitz: There's nothing like the real thing. As a psychotherapist, I worked with patients who had physical and mental illness. I even worked with victims of political violence and with a hospice program. I helped my patients grieve, cope, find resources in themselves and in their communities, and rebuild. But it wasn't until I got whacked with my own illness that I truly understood how violating, grievous, and burdensome illness is, to the patient and the partner.

Colin Son: What are some posts that highlight the relationship between patients and their significant others?

Barbara Kivowitz: I did a series on How To Have the Hard Conversations http://http://insicknessinhealth.blogspot.com/2008/06/how-to-have-hard-conversations.html, which I hope readers found helpful. My favorite hope post is about An Unexpected Conversation in a Waiting Room http://http://insicknessinhealth.blogspot.com/2008/12/unexpected.html. One of the most amazing stories I heard and wrote about is A Story About Alzheimer's: Paul and Mary http://http://insicknessinhealth.blogspot.com/2007/08/story-about-alzheimers-paul-and-mary.html, about how one couple coped.

Colin Son: Any final thoughts?

Barbara Kivowitz: When couples face serious illness it is grievous, but it is also an opportunity to learn how to be with each other on deeper levels. Before illness, the couple can cruise along adapting to circumstances in the moment. After illness, the couple needs to be more intentional and candid. But the effort made to build new habits, to assess responsibilities and lifestyle, to communicate with authenticity, and to become more conscious about adapting to changing circumstances will strengthen the relationship in ways that reach far beyond the illness.

On January 13, 2009, Barbara Kivowitz will host Grand Rounds, the weekly collection of favorite posts submitted by medical bloggers. This weekly blog carnival gives you a chance to sample many different blogs while also getting to know the host blogger.

Mark N
01-22-2009, 11:34 AM
Theresa, thanks for posting the links on this board. I responded on the spinal disorder board and there were some good discussions.

I agree with the author that talking with your partner is very important. Unfortunately our spouses also have psychological problems that get exacerbated by the change CP brings about in our life. It is really nice when your spouse can help you talk about the changes that occur because it impacts their lives too. It is too bad that CP is so overwhelming and any other issues in life really make life too much to handle. The help our spouses or someone else close to us can give us makes it easier to deal with our new lives.

Thanks for starting this post over here.

Diandra
01-22-2009, 05:20 PM
Great article.

My husband is not comfortable communicating his feelings about how my illness affects our relationship. We are currently in therapy together and it has come out that he feels that I already have SO much to deal with that he is afraid if he is honest about his feelings, it may hurt me and that is one more thing for me to have to deal with. Truly, that is really sweet and loving but in the long run does not help us if he is holding feelings in. I am going to send him a link to this because I think it will make him feel less alone in dealing with these issues.

I appreciate that you sent it and think it will be very helpful.
Thank you,
Diandra

Kathi49
01-22-2009, 07:38 PM
Very good article and thank you Theresa.

You know, I have never really asked my husband how he felt about my conditions. I think the only time I really ever asked him a very serious and pertinent question was when I retired. That was a tough decision simply because my income would be cut in half and I certainly didn't want him begruding my decision in the long run. But he was all for it and seems to be okay with it to this day. Sooo, I just now went and asked him how he REALLY felt about all of this; if he had any resentments/regrets or maybe some negative thoughts about it all. He said no, not at all...if anything perhaps inconvenienced sometimes; taking off from work, lifting things for me that sort of thing. I think too because he has his own spinal issues that he "gets it". So, we kind of "teamwork" I guess you could call it. Of course nothing is ever absolutely perfect and of course there have been arguments or disagreements. I am not saying at all that life has been grand. ;) But I do think if something really bothered him, he would have no problem speaking right up. Plus, I think serving in the military taught him to "care for the troops"; that's the only way I know how to put it. So, it comes through in his dealings with my conditions. Now, I don't know what the future holds and I think we all fear getting worse, I know I do. As a matter of fact I have been a bit depressed thinking the my c-spine is getting worse which it probably is. But I am waiting to see what my NS has to say next week. As for my husband, his lumbar herniation is a bad one. But...he is coping with it for now. And, yep, I help him when the pain is bad. Oh boy, I am rambling. Suffice to say that for now we both just take it one day at a time. :)

Peter B
01-27-2009, 10:58 AM
The way my wife and I coped with my becoming ill was to get a divorce.
Problem solved.

Pete

Nana4&cntn
01-27-2009, 01:00 PM
Peter, I am sorry your wife wasn't more understanding! I was single when I started down this path, having already being divorced for several years. I did have a long term relationship and he began drinking, I dealt with that all my life and wasn't going to go back down that road again.

I am happy for everyone who still has a marriage or relationship that has survived! I believe this is the testament to the relationship prior to the accident, disease or whatever caused the chronic pain to start.:)

markm
01-28-2009, 03:31 AM
I'm afraid my marriage went the same way as Pete's. Not surprising really; relationships are difficult enough, throw in a chronic illness and I'm surprised any of them last.

Mark M

Mark N
01-28-2009, 05:17 AM
Pete and Mark M, I had a counselor tell me that more than 80% of spouse left when the other spouse had a chronic illness. There are many reasons why that happens but it is sad anyway as we don't ask for the change in our lives and we need the support a good partner can give.

Kathy, I am sorry you are dealing with this without a partner that would support you as you deal with your pain. You are better off alone though than adding alcohol abuse to the mix.

My marriage was as hurt by my pain and disability as anyone's marriage has been. My wife finally moved out because her anxiety and insecurity just couldn't handle it any more. I am thankful a couple of things happened that made her reorder her life. Since she has been back we have been happier and she has been able to deal with my disability and pain. She is doing things on her own, not upset at me for my inability to do things, and able to limit any upset to one day. I know that I am thankful for the change and it had nothing to do with any changes I have made. Of course, my changes have helped it was the help of God that brought her back into my life.

Theresa, thanks once again for the links and the topic.

mr wzrd
01-28-2009, 12:07 PM
Strangly enough,my wife and i have many of the same physical problems.Back and neck issues,reocouring kidney stones.etc..We both have had to adjust our lives around our disabilities.So for us its mutual compasion , respect.and love,we help advocate on each others behalf.and work as a team to adapt to lifes challenges.I cant imagine going it alone..very sorry for those who do.