Marriages in which one partner has a chronic illness have a divorce rate of 75 percent. That’s a daunting statistic reflecting just how much stress a chronic illness brings to the mix. How do you get through with your relationship not just intact, but stronger? I spoke with Gregg Piburn, author of Beyond Chaos: One Man’s Journey Along His Chronically Ill Wife and Sherrie Piburn, his wife of over 30 years about relationships, chronic illness and the value of honesty.
Sherrie first became ill at 29, shortly after the birth of the Piburn’s second child. She began to have pain, migraines, weakness and memory problems and believes her illness was initially related to postpartum depression. She lives with fibromyalgia and osteoarthritis and has had a hysterectomy and four back surgeries.
Grief and Isolation
Chronic illness affects both partners in a relationship. During some very tough times with her illness, Sherrie describes feeling “unnecessary as a wife and mother.” Guilt can also become a big part of the unspoken feelings in a relationship. Gregg said that “Sherrie felt guilty for being sick and I felt guilty for not being sick.”
After someone develops a chronic illness, couples often go through a period where both partners attempt to soldier through on their own. Gregg, a management consultant, describes four phases of communication. This first one where each person tries to be strong on their own is called False Light, outlined in a video series from a couple’s seminar given by the Piburns (continued in part two, three, four and five). In this phase, partners put on the mask of everything being all right and don’t talk about what’s really going on within each person. The person who isn’t sick may also think that the illness is their partner’s problem to deal with. This can lead to what Gregg calls Harsh Light, in which the well spouse questions or doubts, making statements like “are you really sick?” or “why aren’t you working more?” Gregg half jokingly says “you should use this if you want to destroy your relationship.”
“It is important for partners to understand that chronic illness is a family and couple issue,” Gregg said. He talks about “the day the wife of my youth died,” acknowledging that a chronic illness is a loss for both people, saying it can mean “losing what dreams you had together.” New dreams are made, but you have to grieve for what you lost. The Piburns also talked about the impact of chronic illness on children. Not talking to your kids about your illness can have a profound effect on them, sometimes making them believe you’re dying. To manage children’s fears about what is happening Sherrie recommends to “be honest, without catastrophizing.”
Sherrie describes the watershed moment in their marriage when she “met Gregg for lunch and told them how much I missed him.” This was the start of open and honest communication about the impact Sherrie’s illness had on their marriage. “If you’re not talking about it, emotion builds up. If you try to be ‘strong,’ you end up grieving in isolation.” She went on to say “we used to cry separately. It’s better when you do it together.” This kind of connection leads to a place where the well partner can support and grieve with the sick partner. Gregg mentioned a story he calls “the midnight hug.” He woke up one night because the bed was shaking and realized that Sherrie was crying quietly. Instead of trying to fix the situation, he turned in bed and silently held his wife for a long time while she cried and eventually fell asleep.
To enter into what they call “the major leagues of communication,” the Piburns emphasize the importance of “getting out of the regular environment and talking about your feelings.” Counseling can also be an important factor and for a time, Sherrie found her own counselor when Gregg wasn’t yet ready for this. Together, the couple can move through the Breakthrough Light and into the Rich Light phase of communication where they openly and honestly address major issues.
What about Sex?
Chronic illness can have a profound impact on physical intimacy within a relationship. Sherrie said she usually recommends three things about sex to people who have a chronic illness. The “short and sweet” approach can be very useful to nurture intimacy between a couple. Second, “if you feel even the slightest urge, go for it, even if it turns out that you can’t follow through in the end” and lastly, that “sometimes, you just can’t.” Gregg added that the well partner needs to understand that there are times where “their spouse can’t have sex, but still need intimacy, hugs and feeling cherished.”
A Relationship Philosophy
I asked the Piburns if they had a philosophy of being a relationship when one person has a chronic illness. Gregg outlined three aspects that have helped them build their marriage. First, he quotes the first line of The Road Less Traveled by M. Scott Peck: life is difficult. He spoke about how many of us expect that life should be easy, but the reality is that “life in its normal state is difficult.” Adjusting your expectations can help you cope. Secondly, “we are all imperfect. None of us always handle illness perfectly.” Thirdly, “use whatever happens as a learning or teaching opportunity.” Together, these three philosophies “are a recipe for realistic optimism, as opposed to blind optimism.” Sherrie added to this philosophy, something very important for us all to remember: “you’re not alone. There is hope.”
Chronic illness can tear apart, but it can also build. Gregg told me that “in some way, it has been a gift. I’m not sure our marriage would be as strong as it is now without one of us getting sick.”
Sherrie and Gregg Piburn are currently co-authoring a new book called She Said, He Said: One Illness, Two Perspectives. They provide relationship seminars for people with chronic illness and their partners through True Companions.
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Lene is the author of the award-winning blog The Seated View.
Lene Andersen is the Community Leader for HealthCentral’s RA Community. Lene (pronounced Lena) is an award-winning writer, health and disability advocate, and photographer living in Toronto. She’s written several books, including Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain, and 7 Facets: A Meditation on Pain, as well as the award-winning blog, The Seated View. Follow Lene on Twitter @TheSeatedView and on Facebook. Watch her story on HealthCentral.