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

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.

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 (see below), which I hope readers found helpful.

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.

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How To Have the Hard Conversations

Healthy people can fake it.

If your friends enthusiastically invite you to go bowling or play miniature golf or see a Jack Black movie - all three choices second only to a tooth extraction - you can choose to go and fake your way through having a good time. Health gives you an air pocket that allows you to keep breathing while in an unpleasant situation. And you can participate without having to think much or talk much about it. You can chose to go in an instant.

Illness doesn't offer such a cushion. Any invitation has to undergo a cost/benefit analysis. Will the advantages of participation outweigh the repercussions of the effort involved? Is today a good enough day so that you can afford to spend some extra energy points on activity without having to pay too high a cost tomorrow?

What if it's your partner who is doing the inviting? The complications start to trip over themselves.

You know your partner understands your pain or your tiredness better than any one, so he/she wouldn't be asking if it weren't important. You want to be able to give him/her that gift - the gift of one normal day, even one normal hour as a couple. How much could it hurt to go to a movie or eat in a restaurant or drive to the beach? You may even start to convince yourself that you can participate, without cost, in these low key social activities. How much could it hurt? You may force yourself to ignore the signals your body is giving you - that hint of pressure behind your eyes that could signal a migraine or the pain in your lower back that could lead to sciatica or the slight heat of a low grade fever that could leave you depleted. How much could it hurt to take your symptoms with you and sit in a movie theater for a couple of hours?

You wish, more than anything that you could just do it without having to inventory your body and hold this miserable internal debate -- "Can I?" "Why not?" "You know why not?" "But maybe..?" "You know better." "But it will mean so much to him/her." "You and he will both pay for this later." "Why can't I have just one day of normal!!!"

So, no matter what choice you make, you carry the taint of worry along with you. And, given that sneaky mind/body connection, that worry may possibly flip the switch on your stress and release those fight or flight chemicals that can exacerbate the symptoms you are most hoping to ignore.

You may not be able to alter your physical state, but you can alleviate the worry and give your partner a true gift. How? By having the hard conversation.

Chances are, what matters more to your partner than the movie or the restaurant is feeling a connection with you. Your partner so often has to share you with illness, that he/she may really be asking for some eye to eye, heart to heart synching. You can offer him/her this closeness, not by faking it or forcing it, but by telling the truth, with empathy.

Telling the truth with empathy. Sounds simple, but it is actually one of the hardest forms of communication. It requires that you be aware and honest with yourself and at the same time be aware and honest about your partner's experience. To hold both your and your sweetie's condition with truth and compassion. To not retreat into fear or rage or shame. To not pick a fight, distracting you both and shifting the feelings you don't want onto your partner.

What does a "telling the truth with empathy" conversation sound like? (the following dialogue really happened between me and Richard, once upon a pain-filled time)

She: "I love that you are inviting me to go to the movies. That you want us to have fun together and get out of this house. But I am already feeling (fill in the blank: pain, exhaustion, anxiety, etc.) today and am not sure I can make it through a movie."

He: "I do want to get us both out of the house and be distracted for a while from illness. I'm sorry today is already a difficult one for you. Do you think you can try going to a movie? We can always leave if it gets too uncomfortable for you."

She: "I hate to disappoint you. And me. I know how awful it is for you to see me with pain. And I really appreciate that you want to bring some lightness and fun into our day. I wish I felt well enough, but, and this is really hard to admit, I just don't want to be around people or sit still or have to pay attention to a movie for two hours. And I would feel worse if I tried and then had to leave in the middle."

He: "Well I am disappointed. I wish you were willing to try, but I understand that it just doesn't feel right today. Maybe tomorrow?"

She: "Maybe tomorrow. And today, why don't we sit in the back yard and read the paper together."

-From: “ How Do Couples Cope When One Partner Has a Chronic Illness?”, Medscape Med Students, Pre-Rounds , posted 01/13/2009 by Colin T. Son, Retrieved from: http://www.medscape.com/viewarticle/586288?src=mp&spon=12&uac=21416FZ, 1/21/09 and In Sickness and In Health blog, by Barbara Kivowitz, June 15, 2008, “ How to Have the Hard Conversations”.

 

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