March is MS Awareness Month.
Family physician Lisa Doggett was 36 years old when she was diagnosed with multiple sclerosis (MS), after a cross between dizziness, jet lag and motion sickness, followed by double vision and changes in her taste, drove her to see a neurologist.
“Looking back, I should have suspected it, but even as a physician, it didn’t even cross my mind,” said Doggett, author of “Up the Down Escalator: Medicine, Motherhood, and Multiple Sclerosis.” “When I heard the words multiple sclerosis, I was relieved that it wasn’t a brain tumor but terrified because I had memories of treating patients with MS who were very disabled, and I really felt like all the doors of my future were slammed in my face. It was a terrifying feeling.”
What Doggett, who also had two young children, didn’t realize was how the diagnosis would impact her relationship.
“MS is really tough on marriages, on all really close relationships because it does add an increased level of stress, and certainly that’s been true for my husband and me,” Doggett said. “Over time, it’s been up and down. There have been periods where his anxiety about it has been worse than mine, and I’ve had to tell him, ‘You’re not allowed to be more upset than I am about this.’”
Women are three times as likely as men to have MS. Like Doggett, after the initial shock of the diagnosis, many women also feel a sense of shame — wondering if they brought the chronic disease onto themselves, Heidi Crayton, M.D., a neurologist and medical director of the MS Center of Greater Washington, D.C., explained. Then there’s the cloud of uncertainty that hangs over them about potential disability down the road — along with the actual physical impacts themselves — and worries about how their partner may react. That burden can wreak havoc on intimate relationships.
Watch: How MS Affects the Central Nervous System >>
“The way MS affects a relationship has a lot to do with how well communication is in that relationship and the degree of shame and the degree of willingness to face the diagnosis,” said Gayle Lewis, Ph.D., psychologist and certified multiple sclerosis care practitioner. “Because when you talk to somebody about it, when you tell your partner about it, it makes it more real. When you keep it to yourself and you keep it a secret, you can almost pretend like it doesn’t exist.”
Doggett’s husband, whom she’s been with since she was 18 years old, was with her at her diagnosis and supported her through the treatments, flare-ups and emotional roller coaster that followed. And they’ve worked hard on their communication over the years.
“I was comfortable talking to all my loved ones about my diagnosis,” she said. “I know a lot of people with MS are not able to do that. There’s still some stigma attached to it. I was able to reach out to people on the phone or via email, share the news, and was fortunate to get a lot of support.”
But that isn’t always the case.
“When I have younger women, they often have their significant other come with them, and the response is usually, ‘What can I do to help my partner out?’” said Crayton. “But with older women, I often see them end up being single — men don’t always stay.”
Dating with MS
It’s hard enough to have open communication about chronic illness with a trusted partner, but it’s even more difficult for women who are dating. They must find the balance between telling a potential partner too soon, before they are really ready, and waiting too long, when their date may feel misled.
“It can feel really, really scary. And it can also feel like such a burden that you have to tell somebody when you’re not ready to,” Lewis said. “But if you’re asymptomatic like many people with a relapsing-remitting MS, then you can tell your prospective partner what kind of MS you have, what it’s looked like up until now, and how it has or hasn’t interfered in your life. And for many prospective dates, they’re like, ‘Fine, great, no problem.’”
Ultimately, the right time to disclose is when you feel comfortable.
“Listen to your gut,” Crayton advised. “If you feel like it’s an appropriate time to tell somebody, then that’s great. If not, then don’t. It’s your personal information that you can choose to express or not, and you’re in control over the time that you choose to express that.”
How MS can affect your sex life
MS expresses itself differently in each person—Crayton calls it the “snowflake” disease because symptoms are unique to every individual. But depending on the location of spinal and brain lesions, women may experience numbness in the genital region, an inability to have an orgasm, or spastic reactions in their limbs that could make sex difficult or uncomfortable. Fatigue, depression and low libido can also lead to disinterest in sex. Lack of bladder or bowel control is the issue Crayton hears about most from her patients.
Read: Beyond the Physical: How MS Affects Your Life >>
“It provokes a lot of anxiety for women,” she explained. “They think, ‘Oh my gosh, what if, during sex, my bladder empties?’”
The fear of such accidents and their partner’s reaction to it can stop a woman from wanting to engage sexually.
“Having MS can make a woman feel ugly and deformed and disfigured and unwanted, and that’s not going to necessarily incentivize someone to want to try to go out and meet somebody or be intimate with their partner,” Lewis explained.
If you are sexually active, be sure to talk to your healthcare provider about contraception, and whether you plan to have kids. Being on MS medications doesn’t affect your contraceptive choices, but, said Crayton, some medications can harm the fetus, so your treatment plan could change if you’re pregnant.
How to bring back intimacy while living with MS
MS symptoms or fears don’t have to put a damper on your sex life. Here are five tips to help with physical intimacy if you’re living with MS:
1. Communicate early and often. If certain positions don’t work for you or you need to take things easy due to fatigue, share that with your partner and make adjustments. “It’s about doing your best to be as real as possible,” Lewis said. “And if it doesn’t work, if one partner gives up, it means you try again. It means you talk about it afterward, outside of the bedroom. You talk about it when you’re no longer trying to be intimate with one another, but when you’re in a safe space and you can be honest.” If communication proves difficult, consider couples counseling to help with strategies.
2. Don’t be afraid to laugh. There are bound to be some awkward situations, and being able to laugh can ease the tension and allow for conversation. “The people that are successful partners . . . do a lot of laughing and it brings them closer together,” Crayton said.
3. Redefine intimacy. People have preconceived notions about intimacy, but intimacy can be experienced in many ways. “It can mean a massage, it can mean spooning and just being skin to skin. It’s all about connection,” Crayton said. “Connection is sometimes a more comfortable word than intimacy, which tends to be very finite in people’s minds.”
4. Try a body-mapping exercise. Lesions might change how and where you want to be touched, so Lewis suggests a body-mapping exercise to get reacquainted with your desires. “Find a time and a space that feels private where you can relax and find different means of touch for your body. Use your hand, find a feather, find a soft cloth, and use each one to go up and down your body very slowly, and notice what feels good and what doesn’t feel good.”
You might just find a new spot that gets you excited. Then, have your partner watch, show them what you like, and tell them how it feels.
“It’s a very intimate experience,” Lewis explained. “It’s not about having an orgasm, it’s not about the finish point, it’s about the process.”
5. Keep having “me” time. “Even if you’re not having good intimate time with your partner or don’t have a partner, you still should be continuing whatever kind of masturbatory exercises you do,” Lewis advised. “Because your sexuality is your sexuality. It isn’t your partner’s sexuality.”
This educational resource was created with support from Novartis.
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