In Sickness and In Health: Illness and Marriage

In Sickness and In Health: Illness and Marriage

This article relates to Counting Backwards

While planning her wedding at the age of twenty-four, after seven years of dating her fiancé, Erin Fortin was diagnosed with a rare blood disorder. Paroxysmal Nocturnal Hemoglobinuria, or PNH, involves the damage of red blood cells by the immune system. Because Erin and her future husband John both had a healthy sense of humor and loved to laugh, they tried to look at the bright side. "[O]nce we'd accepted my condition, we laughed about how we'd vowed 'in sickness and in health' before even getting to the altar."

In a blog on the website PNH News, Erin talks about what has helped over the six years of her marriage and laid out three concepts she and John prioritized. The first thing her soon-to-be husband did, along with her mother, was to research PNH. What was it exactly? How was it going to mature in her body long-term? What were the symptoms? John told her to "focus on feeling better, and I'll handle the research." The second thing they did was create one-word codes for when Erin was struggling to communicate how she was feeling inside her body. "Spoons" meant she didn't have energy. "Banana" was so they could lighten up and have a laugh. Lastly, they had to expand the idea of 50-50 teamwork, because sometimes Erin couldn't contribute to the relationship the way she wanted to and John had to do a little more, including after their first child arrived. Together, they have found a way to keep their marriage intact. It may have helped that they learned to deal with illness while newly married.

But illness in many marriages proves to be a heavier burden. For instance, Italian social scientists tracked 25,000 heterosexual couples in a longitudinal study that lasted 18 years, and discovered illness can sometimes be too much for a marriage to endure, particularly when the wife is in poor health. Of the 50-64 age cohort, when the wife was ill and the husband was not, the marriage was more likely to crumble than when both were in good health. When the husband was ill, like in the novel Counting Backwards (where husband Leo suffers from Lewy Body dementia), the marriage was just as likely to stay intact as if they were both in good health. For couples in which one or both partners were 65 or older, depression was more of a factor than physical health, but followed a similar pattern. Scientists discovered that a wife's depression was more often a factor in a marriage ending, while a husband's depression had little impact on the marriage's survivability.

Like most wives of sick husbands, Addie's job becomes saving Leo. She shepherds him to doctor after doctor, even after being told she is overreacting. She keeps a journal of symptoms as a reminder that what she sees in Leo is really happening. She even lies. She makes an appointment with a neurologist but tells Leo, who is now avoiding doctors, that he made it months earlier but forgot. After Leo begins exhibiting dementia symptoms and the life they once enjoyed has suddenly changed, Addie is lonely and depressed. In a conversation with herself, she says, "Face it. You are lonely, and worst of all is when Leo is with you. He's there but not there. Not Leo." She keeps remembering how they loved going out to restaurants with friends, but once he was ill they began to stay at home. Sometimes Leo is paranoid and violent. Sometimes all he wants to do is be by himself. She notes the change in her journal: "Refused to go for dinner with Miriam and Patrick Tore two pages from a book, threw them in garbage Bought dog biscuits for cat, then asked why I bought dog biscuits for cat."

"You have to rewrite the relationship's expectations. And the longer you've been married, the harder that is to do," says Zachary White, a professor who has taught courses on topics relevant to patients and caregivers.

The future of a marriage inevitably changes with illness. Plans may have to be shelved. Friendships may not be so easygoing. Wayne M. Sotile, Ph.D., director of psychological services for the Wake Forest University Healthy Exercise and Lifestyles Program, acknowledges this reality: "Coping with this illness will be part of your marriage from now on…Today, most illnesses aren't short events. They're processes that go on and on and on, possibly for the rest of your lives. And both of you will need different things at different times in the process. Couples who take responsibility for this can build stronger, closer marriages despite the presence of illness."

Married couple touching hands
Photo by Amanda Belec, via Unsplash

Filed under Medicine, Science and Tech

This article relates to Counting Backwards. It first ran in the April 9, 2025 issue of BookBrowse Recommends.