Nearly half of all Americans live their day-to-day lives with at least one chronic illness as a companion. Cancer, diabetes, heart disease, chronic fatigue syndrome, Crohn's disease, asthma, arthritis, lupus, sickle cell anemia and a host of other conditions pillage millions of personal lives and marriages each year. Statistics show that over 75 percent of marriages plagued by chronic illness end in divorce.
Nothing quite assists a spouse in understanding his or her role of helpmate like a chronic illness. For married couples, a diagnosis means twice the heartache, discomfort and worry.
If you have a chronic illness, how do you juggle your needs with the needs of your spouse? How can you fight feelings of inadequacy and guilt? If your spouse has a chronic illness, how do you "keep it together" for him or her? What if you become burned out? What do you do when you find yourself thinking, "This is more than I bargained for?"
If you're like most couples, you breezed through the "in sickness and in health" clause of your marriage vows without much thought. You were probably too busy gazing into your spouse's eyes, beaming from the thought of marrying your soul mate and eagerly anticipating your wedding night.
Had you given it some thought, you might have pictured "in sickness and in health" as serving your wife chicken noodle soup when she has the flu or running to the store at 10 p.m. for another box of Kleenex and Sudafed for your husband's "monster" cold. Aside from the token mention of, "Yes, honey, I'd still love you and take care of you if you were in a car accident," calamity was probably the furthest thing from your mind.
More often than not, the reality of "sickness" materializes out of nowhere. When your spouse is diagnosed with a chronic illness, you begin to realize that your life, your spouse's life and your marriage will never again be the same. It's easy to let thoughts such as, "Will this affect his lifespan?" and "Will we still be able to have kids?" torment you.
Below are eight tips for dealing with a diagnosis as a couple.
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All marriages face obstacles. Most, however, aren't as pervasive as chronic illness, which can rear its ugly head on a daily basis: Your wife, who suffers from chronic fatigue syndrome, may wake up on a Saturday too fatigued to attend the all-day BBQ festival you both had been looking forward to. Your husband's Crohn's disease severely limits where and what the two of you can eat. Your wife's asthma flairs up during sex, causing the two of you to stop prematurely. Your husband, who suffers from diabetes, slips into a hypoglycemic seizure that sends you both to the hospital on a Sunday evening.
Spouses of individuals who suffer from physically debilitating conditions often find themselves filling both the role of spouse and caretaker/nurse. Spouses of individuals who suffer from mental conditions may find themselves feeling more like a babysitter than an equal partner in the marriage.
Few things in life test wedding vows like chronic illness. If your spouse was diagnosed before you tied the knot, you may have underestimated the toll the condition would take on the marriage. Or, you were so in love you didn't care. As time progresses, it's natural to wonder if you've gotten "in over your head." If your spouse was diagnosed after your wedding day, you may find yourself thinking "If only I had known how hard this would be. Would I have still signed up for this?"
Below are do's and don't's for the patient and spouse on coping with marriage and chronic illness:
Jim and Lynda Walters had been married for 13 enjoyable years when, in January of 1977, Lynda was diagnosed with multiple sclerosis, an autoimmune disease in which the immune system attacks the central nervous system.
The two had known something was wrong for a couple of years. Lynda was suffering from double vision, and occasionally her feet wouldn't lift properly when she wanted to walk or get out of the bathtub. Eventually, Jim checked Lynda into a hospital for testing. The family of four received the diagnosis a week later.
"It had been coming on so gradually," says Jim, who does most of the speaking for the couple these days. "It wasn't like you wake up one morning and suffer from a stroke, which is very traumatic and immediate. But it was sad. We knew it was going to make life a bit different.
"Lynda's response was 'I don't have time for this!' 'We're not going to let this defeat us,' is the impression I got from her."
Lynda's condition is chronic, meaning "there's a continual up and down, but over time there's more down than up," Jim says. "It's a continual reminder that things are slowing down."
Ten years after Lynda's diagnosis, she stopped driving. Twenty years after her diagnosis, the couple acquired a retrofitted minivan in which Jim could more easily transport her – another emotional milestone.
"My sons ask me if I ever cry; I say, 'Sure,'" Jim says. "They ask me if I ever get angry, I say 'Yeah. Not at mom, but sure.' But this is normal for us. We don't lament and grieve over the things we don't have."
As Lynda's condition slowly worsens, the couple fine-tunes their routine "weekly and monthly." Due to Lynda's condition, the two spend most of their time together.
"We're not afraid to be alone," Jim says. "We enjoy each other!"
The couple experiences each day to the fullest at each other's sides. They go to the opera, movies and restaurants. They travel to see family and friends, watch "Jeopardy" and attend parties. Jim, a former professor of Biblical Studies at Arkansas' John Brown University, still teaches an occasional class, speaks at churches and performs premarital counseling and weddings; Lynda is almost always present during these activities.
"Lynda was a straight-A student," Jim says. "She typed my dissertation at 80-90 words a minute. She used to play the piano and organ, and MS gradually took those things away from her. That's why I say she's a hero."
Adjusting to the reality of Lynda's diagnosis: "There was a point where I did not respond well. I actually pulled away from Lynda emotionally for a period of time. The saddest point of my life was when I pulled away from her one night in bed. Somewhere in the midst of that terrible response I woke up and realized I was acting of the flesh, like somebody who didn't know the Lord. I realized I was incredibly selfish and fallen, and God began to change my heart."
The symbolism of his relationship with Lynda: "One of my students stayed with us off and on for a period of time. She wrote a thank-you note that said, 'I want to thank you for allowing me to be there with you and Lynda. I realized the way Lynda is to you is the way I am to be with God: totally dependent.' I hadn't realized we were giving a visual representation of that relationship. God is the one who has to be undergirding, guiding and encouraging me, helping me keep perspective; at the heart of it, helping me be a lover."
True joy: "I think sometimes people think I dropped some kind of joy-pill down my throat and all of the sudden I'm jumping around and smiling, but nope. It's amazing: Those moments of joy are often times when I look across the bed at Lynda when she's sleeping and I realize what a gift she has been to me, this person who believed in me and encouraged me."
A major turning-point in their MS journey: "I remember when the nurse came to put the catheter in and I thought, 'Wait a minute, I'm not ready for this. We're not ready for this. We still have sexual intercourse. We still love each other that way.' She said, 'Well, we don't usually put this in people who are still having sexual intercourse, so think about it.' That was the point when we realized that this is a matter of physical survival. It was going to be a major adjustment. The whole journey was sort-of a gentle transition and then we came to this V in the road. We could go left and give up, as many people do, or go right and either be bitter or live happily ever after. We decided to be happy and rejoice in what God still allowed us to have."
His advice to couples dealing with a chronic illness: "Deal with selfishness through love and falling in-love with God. Selfishness is just not at all love. Love is other-person concerned, reaching out to meet their needs. God calls you to give yourself, to deny yourself, to be other-person oriented, and you can find life in it."