Navigating the rocky road of dating and relationships is challenging enough when you're perfectly healthy. Having a degenerative disorder like multiple sclerosis (MS) can throw up additional barriers at every turn, from deciding whether to disclose your status on a first date to grappling with issues of intimacy down the road.
Though the path to a satisfying relationship may require unexpected U-turns and alternate routes, make no mistake: People with MS can and do date, experience intimacy, and thrive in long-term relationships.
For a glimpse of what adults with MS can expect en route to building and maintaining relationships, we turned to the experts: adults living with MS, and the professionals who help them along the way.
How Soon Do You Tell?
We all have skeletons in our closet. But we don't always know when to let them out.
"I don't think secrets are a good thing. But when you go out with someone for the first time, you don't owe that person much of anything," says clinical psychologist Rosalind Kalb, PhD, director of the National Multiple Sclerosis Society's Professional Resource Center. "But as soon as you've decided that this person is worth more of your time and attention, I think it's important to start sharing all kinds of information about yourself."
Even then, you can't guarantee what kind of response you'll get. That's what 28-year-old Michele Mullis, who's had MS for five years, has learned.
"Telling someone about your MS is a struggle for many reasons. When you're first getting to know someone, it's not a discussion that's pleasant or fun. There are a lot of education-type questions that are asked. It's a big process to go through with someone you may or may not like," Mullis says.
That's why she waited three months to tell someone she was dating about her MS.
"He was completely offended that I would hide it from him. I think he felt like I was being deceitful. Subsequently, he didn't want to date me anymore," Mullis tells WebMD.
Now, she handles things differently.
"As I've matured, I've become more comfortable with myself and who I am, and sometimes I've told people on the first date. I also date people significantly more mature and educated," Mullis says.
She also admits to having a different view of dating, which she attributes to both a growing maturity and an acceptance of herself as someone who has MS.
"I definitely feel like I am more comfortable with who I am and, subsequently, I have fewer expectations from others. I realize I have to make the decision to make myself happy," Mullis tells WebMD. "I'm not seeking a man to fulfill those needs."
Self-Acceptance Eases Disclosure
As Mullis points out, having the maturity to accept your own diagnosis of MS makes it easier to share it with others.
Rick Steinhaus who, at 46 years old, has lived with MS for 12 years, recalls the impact the diagnosis originally had on him. "My perception of myself was that I was lesser of a person. You end up asking yourself, 'What's wrong with me? How could this be?'" he says.
"We [men] have this bravado: We're going to be the caregiver, the breadwinner," Steinhaus acknowledges.
Had he maintained this attitude, Steinhaus may have opted out of the dating scene altogether. As it was, he was engaged when he learned he had MS. The marriage ultimately ended in divorce. While he says MS wasn't the sole reason for the marriage's failure, Steinhaus admits, "It contributed to my marriage's demise."
When Steinhaus told his present girlfriend about his MS, he wasn't concerned about it compromising his masculinity in her eyes. At the time, he had no intention of dating her. "We worked together. I confided in her because, as I told her, 'You're my friend, and I want you to know about this.'"
Out of an understanding friendship grew something more. Presently, Steinhaus and his former co-worker have been dating for more than seven years. "I think one of the things that drew me to her was how incredibly compassionate she was," Steinhaus says.
Squelching his male bravado has helped him maintain the relationship. "It's taken me a long time to relinquish some control; to say, when I'm too tired to drive, 'Will you take over?'" he tells WebMD.
Issues of Intimacy
"I have to know and respect my own limitations; conversely, so does the other person in the relationship," Steinhaus says. For him, that means accepting the fact that he can't always maintain the same pace as his partner as they walk through the streets of New York, despite having once jogged together at an even pace.
For many couples with MS, it means being up front about problems of sexual dysfunction, which affect up to 80% of all adults with MS.
Causes of Sexual Dysfunction
"There's no relationship between disability and sexual function," says Marie Namey, RN, MSN, a clinical nurse specialist at The Cleveland Clinic's Mellen Center for Multiple Sclerosis Treatment and Research. "It can affect individuals with no visible symptoms."
While it's sometimes difficult to tease out the exact origin of sexual dysfunction, professionals have categorized MS-related sexual dysfunction into three types.
Primary sexual dysfunction can result from the formation of MS lesions on the spinal cord affecting nerve pathways. "There are so many pathways along the spinal cord that mediate different aspects of sexual function -- drive, orgasm, arousal. Because there are so many, there's a good probability that there's going to be a lesion somewhere along the way," says Frederick W. Foley, PhD, a neuropsychologist and expert on sexual dysfunction in people with MS.
Then there's secondary sexual dysfunction. That's when MS symptoms or medical interventions interfere with sexual function or expression. For instance, many people with MS suffer from bladder dysfunction, an inability to control urination. "Concern about having bladder problems during sex is common," says Namey. Fatigue, another common symptom of MS, also zaps people's interest in sex.
Tertiary sexual dysfunction -- a cluster of psychological, social, and cultural issues -- can also play a role. "Some people have an altered body image. They may lack self-esteem due to a change of status in life, whether it's a professional change or something else," Namey tells WebMD.
Help for Sexual Dysfunction
Despite the high incidence of sexual dysfunction among adults with MS, experts say it's often reversible. They advocate honest, open communication to jump-start the process.
"Most people have inhibitions when it comes to talking about sex. In our country, sex is either framed as pornographic or highly medicalized. There's not a good in-between language for people to comfortably talk about sexuality," Foley tells WebMD.
"If you can get people to talk about sexuality, they can sometimes solve their own problems," he adds.
Others find help through formal counseling interventions.
"The vast majority of people with MS and their partners can find help in a relatively short period of time," Foley says, recalling a young female patient of his. Prior to being diagnosed with MS, she enjoyed a healthy sex life with her partner. Shortly after being diagnosed with MS, she lost all interest in sex. "Her sudden loss of libido was very distressing for her," Foley says. Even more distressing, her medical team found no specific psychological or medical cause to her sexual dysfunction. But they didn't give up on treating her.
"Even if the multiple pathways that mediate drive and libido are shot, teaching patients and their partners how to touch each other differently can enable them to experience orgasm," Foley says. That approach was effective for the young woman whose situation he described.
"The single most important thing in the rehabilitation of sexual dysfunction is getting people to get over inhibitions about their bodies and talk about sexuality, and the mechanical problems they may have," Foley tells WebMD.
That same advice applies to all aspects of a relationship, not just to intimacy.
"Relationships with good communication and a solid commitment can weather all sorts of challenges," Kalb notes.