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In Sickness and In Health
The impact of CF is deep enough to color the daily live of both partners in a marriage.” Hospital stays, morning and evening treatments and adult-onset health issues all dictate a lifestyle that is very different than that of most other couples.
Brad understood that his plans to marry Lauren, a 22-year-old CF patient diagnosed at birth, would lead him down a path rarely traveled; it was a journey he took seriously.
“That … gesture that happens in every wedding, where the father brings the bride-to-be down the aisle and gives her hand to the groom – that was more than symbolic,” Brad acknowledges.
In taking over the role of primary caregiver, Brad now joins a growing number of marriage partners leading a life as part spouse, part nurse and part cheerleader for the CF patient they married.
An island of two
Flexibility seems to be key to weathering the sometime volatile healthscape of a marriage involving cystic fibrosis. An uncertain future together, unpredictable health issues and the question of whether or not to start a family can lead many couples to experience a deep sense of isolation.
Turn that coin over, however, to find the very elements that cement the bond for many couples sharing a life with the defective gene.
“We try to make the most of every day,” says Isabel, a 36-year-old cystic fibrosis patient who underwent a double-lung transplant three years ago. She and her husband, Andrew, have been married for eight years.
Andrew was there when she reached end-stage cystic fibrosis, as well as when she recovered from her transplant. He nearly lost her, giving their marriage a bittersweet edge that adds enormous depth and meaning to the relationship.
“I do believe that as I reached end-stage CF, our love connected us and pulled me through, gave me the will to live to fight those last days,” Isabel says.
Building support
While it may be difficult for anyone outside of the marriage to really appreciate the complexity of the cystic fibrosis lifestyle, garnering support from friends and family is paramount. This is true of any marriage, but particularly important when one of the partners has something that can be as disabling as cystic fibrosis.
Since 1984, Louis Harris & Associates has surveyed the relationships of people with disabilities for the National Organization on Disability. Their studies indicate that marriages in which one person is disabled experience a higher-than-average divorce rate, making good communication essential to success in a marriage embraced by cystic fibrosis.
Probably nowhere is this more important than in the discussion of whether or not to start a family. The physical limitations cystic fibrosis can create in regards to having children range from CF-induced male sterility, to women's bodies unable to withstand the physical demands of pregnancy.
Even in the case of adoption, most couples find themselves navigating the rough waters of prognosis, expected longevity and the effect a partner's early death may have on the family's sense of security and well being.
Plenty of adult cystic fibrosis patients are now having families of their own, however, proving that the disease doesn't have to act as a thief in the homes of people living with CF. New fertility technologies are opening the door to a new potential, giving couples the opportunity to experience a life they may never have imagined possible.
Indeed, it has only been in the last decade or so that medical advancements in the treatment of CF have caught up with the dreams of those living with the disease; dreams that were once only whispered on the most optimistic of days: Love, marriage, family.
Yesterday's dreams. Today's reality.
