Multiple sclerosis (MS) usually starts between the ages of 20 and 50, when people are in the prime of their lives and planning for the future. But while some patients feel like MS makes intimate relationships more strained, many couples report that it has brought them closer together. “It makes them feel like a team facing a common enemy,” says Rosalind Kalb, PhD, a clinical psychologist and senior programs consultant for Can Do MS. And for those who aren’t already coupled, MS may be an easy way to weed out less-than-suitable partners.
When you’re single, determining when and how to broach the topic of MS with a prospective significant other is almost as scary as the disease itself, but it doesn’t have to happen on the first date, says Dr. Kalb. She tells her patients to think about when they would want to know similar information about a person they’re dating and use that as a guide. You may not want to blurt it out before the appetizers arrive, but why not put it on the table early in the relationship, when the stakes are lower?
That’s the approach that Melissa Sherak-Glasser took. Her secret came out on her first date with Danny Glasser, the man who would become her second husband. “Danny had had conversations with a mutual friend, so he already knew a little bit about me,” Sherak says. “At dinner he asked, ‘Why did you run with the Olympic torch?’ and ‘Why do you write inspirational books?’ That was my moment.”
After sharing the news of her illness with Glasser, Sherak-Glasser pleaded with him not to read about MS on the internet but to learn about the condition through her instead. He agreed. “It was scary, sure,” says Glasser, “but MS wasn’t a reason for me not to fall in love with Melissa. Today she has MS; who’s to say that I won’t have cancer or some other illness tomorrow?”
While Glasser’s response to Sherak-Glasser’s news was overwhelmingly positive, Dr. Kalb recommends that patients be prepared for anything from dead silence to the person thinking you already have one foot in the grave.
“It’s all in how you convey news of the disease,” says Traci Seidman, PhD, a clinical psychologist in Sunrise, FL, who also has MS. “If you come to the conversation with a sense of doom, your partner is going to take that cue. You have to learn not to live your diagnosis.”
Different Roles
Whether you’re disclosing to a new beau or living your day-to-day with your spouse of 20 years, you’re likely to notice a significant shift in roles following news of the diagnosis. MS symptoms typically come during a life stage that’s equated with productivity, child rearing, and accomplishment. It’s a time when your significant other may expect to play the caregiver role for an elderly parent or a new baby but not for a spouse.
“Many partners have a reaction of grief,” says John Corboy, MD, FAAN, professor of neurology and co-director of the Rocky Mountain MS Center in Westminster, CO. “People go through the typical stages of grief: denial, anger, sadness, and then accepting the illness.” And with acceptance come role changes.
Research shows that women, in general, tend to focus on keeping their husbands involved, functioning, and independent. Men, on the other hand, typically try to protect their wives’ energy, learning to give injections with the least amount of bruising and pain, taking over household chores, and accompanying their wives to medical appointments. A condition like MS can bring out supportive and nurturing qualities in partners.
Nevertheless, the line between caregiving and pity can blur. “My first husband didn’t want to stress me out or upset me,” Sherak-Glasser says. “I realized he saw me as a victim. He wasn’t being true to himself and, in the long run, he wasn’t being true to me.”
Some couples are undone not by role changes but by different coping styles. The husband in one couple didn’t want anyone to know about his illness, so his wife had to stay mum too. Not being able to talk about it with her friends was difficult, but she felt she needed to support her husband.
In some cases, when partners sacrifice their own needs and desires to the point where they lose themselves in their partners’ illness, the relationship suffers.
Beyond the partners’ roles in the relationship is the disease itself. For some couples, MS is the third person in a marriage—one with demands, desires, and a disposition all its own. Just as with a person, it can take time to find the right way of relating to the condition.
“What’s hard for partners is that you’re not in a position where you can do anything but react,” Glasser says. “When Melissa has an exacerbation, it’s a very tricky line that I walk. On the one hand, my role is to be supportive and encouraging, but on the other, I want to help get her moving again and shifting into a proactive pattern.”
Flexibility and creativity are two of the key qualities that couples and families who manage MS successfully learn to develop. “MS is unpredictable and changeable, so couples have to navigate that by being flexible about their usual roles,” says Dr. Kalb. “If the affected person usually takes care of the laundry and cooking, the partner might have to pick up the slack.”
The Partner’s Side
“MS affects everyone in the family, not just the patient,” says Dr. Corboy. Partners may need support at the same time that they’re expected to provide it. The partner also experiences losses in terms of role and relationship changes, career and financial difficulties, and reduced physical intimacy. Each of these factors places additional strain on the relationship. Some partners even feel as though the relationship journey is easier for the person who has MS.
Partners need to get support, says Nancy Fleming Courts, PhD, associate professor emeritus in the Adult Health Department at the University of North Carolina. “The issues for the partner are not the same as for the person with MS.”
For the partners, it’s often a question of stamina: How long can they sustain the required level of caretaking? Most experts emphasize that people can’t be good caregivers unless they take care of themselves first. “It’s like when you get on an airplane and the flight attendant instructs you to put on your own oxygen mask before assisting the person next to you,” explains Dr. Kalb. For some partners, that’s just too much.
Despite these challenges, research shows that people with MS stay married and get divorced at the same rate as the general population. According to the National MS Survey, two-thirds of respondents claimed their relationships stayed the same or improved following their diagnosis.
The important thing is making sure partners have an outlet for the stresses of caregiving. “If I go and do something that allows me to engage my body and not my mind, I’m usually better off,” Glasser says. “I also have a very strong support network, including Melissa’s family and the friends I’ve known since I was a child.”
Intimacy Issues
As many as 56 percent of patients experience some impairment in sexual functioning, and others report a drop in libido. “In the early stages of the illness, depression and anxiety contribute to a reduced libido,” says Dr. Corboy. On the other hand, some patients, especially those with milder symptoms, crave more intimate contact with their partners.
“In some ways, dealing with MS makes me want more intimacy,” says Sherak-Glasser. “When I don’t feel good physically, I want to experience that level of closeness with Danny.”
For some men with MS, erectile dysfunction is a problem. “For men, the obvious advantage is that there are drugs available, like Viagra, Cialis, and Levitra, that increase blood flow to the penis,” says Dr. Corboy. “These medications are remarkably effective in men who have MS—they have an 80 to 90 percent success rate.”
Despite the impact of MS on quality of life, many patients say MS has had some positive effects on their lives, often helping them develop inner strength, make new friends, or become involved in new activities. Perhaps even more important, most report that the quality of communication with their significant others has improved.
(A version of this article first appeared in the May/June 2007 issue of Brain & Life.)
