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How Do Couples Cope When One Partner Has a Chronic Illness?

How Do Couples Cope When One Partner Has a Chronic Illness?

Posted 01/13/2009  
Colin T. Son
See:  http://www.medscape.com/viewarticle/586288?src=mp&spon=3&uac=39980BG

"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, 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.

In Sickness and in Health hosts Grand Rounds
January 13, 2009

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, which I hope readers found helpful. My favorite hope post is about An Unexpected Conversation in a Waiting Room. One of the most amazing stories I heard and wrote about is A Story About Alzheimer's: Paul and Mary, 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."


Mike



  
11 Responses
Avatar universal
Thanks, Mike. I looked at her blogsite and found this little gem she wrote about a husband who wanted his donated kidney returned as part of the divorce settlement:

"And how does love become hate? Does that happen when such a critical mass of disappointment has accumulated that the pile starts to fester and breed hate bacteria? Does it happen when two people have been so blinded by their own illusions for rescue that they enshroud their partner with expectations no mortal could meet? Does it happen in the day to day, inch by inch annoyances that eventually crescendo into an unscalable wall of misery? Does a moment arrive when all murmurings of tenderness disappear leaving only a banshee shriek of hate?"

Donated kidney or not, this seems to apply to many marital breakdowns, except for the say nothing, leave a note and walk out the door types. I don't know which is worse.
Avatar universal
thanks for posting. Wish I had more knowledge on the subject before I started treating. Ended up losing some good friends not to mention a lot of family friction. Of course it would have been good if they had more knowledge as well. I think it was you that quoted the minister once, or quoted someone, something about that people will put up with you being sick for about six weeks and after that they've more or less had it. Whoever said that pretty much hit it on the nose.
Avatar universal
This is a really good article,  i feel strongly about spousal support, I think they go through as much we do, their lives change also. We need to remember to thank them, and support them also,


Thanks for sharing da Michaelo, very good read!



Avatar universal
Your memory always impresses me.
It was a black preacher on TV who said.

"When you first get sick you got visitors and gifts and all that stuff but after about 6 months that will change and you won't have anyone with you.
You can get sick but don't stay sick too loooong cause people get tired of it."

That is probably not an exact quote but I am very close.

I found that to be very true but I was sick a lot longer4 than 6 months too.

Mike
Avatar universal
  I know what you mean about 6 months or 6 weeks. People do get tired of it. My Husband is in total denial still after years. He still thinks that if you just pray enough or eat right or try harder it will all be okay.      What I want to know is how do you get a break from it?  Could I just have a day or 2 where I don't have to think about it.   -Libby
276730 tn?1327966546
Fantastic article ..I can so relate. Years ago when I was married I believe I was suffering with ACUTE hepC gravely ill-no one knew anything at tthat time. Was married 8 years
my so called husband thought I was going to die -he left and I never saw or heard from him again.
Nice guy eh???
Long story short he passed years ago of a benign brain tumor.

To all of you that have supportive loving spouses thats the way it should be!



Charm27
320078 tn?1278348320
Great article, I know that without Kenny (and of course you guys) I would have had and even harder time.

you do find out who are your true friends and who are the fair weather ones!

peace
rita
Avatar universal
One of my greatest fears is that my illness has changed my marriage forever.  How do you find your way back from patient to desirable woman again.  I wish I knew.
Avatar universal
I think we all worry about that, I suppose we just hope our partners are who we thought they were when we married them.

The same with friends, that we chose them wisely, people I think people do not want to know things, when it doesn't concern them, maybe they get uncomfortable, like with death, Worrying. We can not imagine not doing the best we can to keep each others spirits up.  

To discount a dear one or a friend after standing next to them is a  hard thing to bear.

After coping with all this,    it is a real concern.  

Avatar universal
As always, Mike, a great article and a lot of thoughts are swirling around in my head. Walrus and I have really changed a lot. I don't even remember him as "healthy" or even anything remotely like it. He's been sick in one way or another for so long...and even tho EOT is coming up, I do not comprehend how his health can ever change. I feel like this is the way it is, and always will be. Not like in a negative sense, just like in a "well, that's the way it is" sense. Just acceptance. I have such a feeling of foreboding, & I know it comes from the fact my dad was sick for 17 years & my mother cared for him as he slowly, slowly died. I am terrified of that happening to us.
I KNOW this disease has changed our marriage forever. How could it not??  
Avatar universal
His condition may improve Liz. I cannot recall what week he is in and how much time he's been undetectable but, if he achieves SVR, things will change for the better. The road he and you have traveled is extremely difficult and you both will probably be left with some scars. But even scars look better with time - just take a look at Brent's stomach.
Good luck Liz and Brent,
Mike
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