Every married couple who has made it past the honeymoon stage knows what the vows “for better, for worse” mean. Most of us have experienced “for richer and for poorer” as well. But only when one partner becomes chronically ill does the promise to love “in sickness and in health” really get put to the test.
Chris McGonigle was 29 years old when her husband, Don, was diagnosed with multiple sclerosis. They lived with the disease for 15 years before Don died in 1993. During that time, McGonigle, now 50, cared for her husband and two children and took over the responsibilities of their day-to-day lives. She also discovered that when one spouse is diagnosed with a serious illness, two lives are devastated.
“Any chronic or terminal condition that affects one partner impacts the other — and the relationship as well,” says McGonigle. “In many cases, the well spouse becomes the caretaker, and the balance in the marriage shifts away from an equal partnership. The situation puts a tremendous strain on the healthy individual.”
Estimates are that 41 million Americans share McGonigle’s experience as the spouse of a sick husband or wife. But Alan Drattell, spokesman for the Well Spouse Foundation, a national group that provides local and online support groups, information and referrals to its 3,000 members across the country, says that the needs of the well spouse are often ignored by relatives, medical professionals and friends.
“Your family and friends are well-meaning, but they go on living their lives, traveling or retiring to Florida, while you’re expected to function at the same level as [before the illness],” says Drattell, 66, who has been a “well spouse” since his wife was diagnosed with MS 30 years ago. “You feel isolated, resentful, guilt-ridden and then crazy for having all these ‘awful’ feelings.”
Both Drattell and McGonigle have written books based on their experiences. The Other Victim by Drattell (Locks Press, $17.95) includes interviews with others who have had to deal with a partner’s chronic illness. Surviving Your Spouse’s Chronic Illness: a Compassionate Guide by McGonigle (Owl Books, $13.95), examines the effects of illness on communication, finances and spirituality, as well as the feelings of anger and denial that exist between the sick and well spouse.
“People need to know that enabling the person you love to live a quality life with dignity is a tremendously rewarding experience,” says McGonigle. “They also need to know that it’s acceptable to be angry with a sick spouse, it’s natural to resent the expense of treatment and that it’s OK to grieve for the life they expected to have.”
Experts offer this advice to those facing a partner’s illness. First, acknowledge that you need nurturing too. If you can afford to have help, do so, even if it’s just for an occasional afternoon or evening. Check with local organizations and agencies for information on support programs for caretakers. When friends offer to help, let them. Be as specific as possible regarding what you need.
As much as possible, maintain your own interests, and build an independent life. Don’t let yourself become isolated. Find a safe place to vent your feelings: a support group, therapy or even writing in a journal. Remember that the costs of a chronic illness can be catastrophic. Consult an elder-law attorney immediately after the diagnosis is confirmed for advice on Medicaid, Medicare, Social Security and financial planning.
