March is Multiple Sclerosis Awareness Month. Family doctor Lisa Doggett was 36 years old when she was diagnosed with multiple sclerosis (MS) after a mix of dizziness, jet lag, and vertigo followed by double vision and changes in her sense of taste prompted her to see a neurologist. “Looking back now, I should have suspected it, but even as a doctor, it never crossed my mind,” said Doggett, author of “Up the Down Escalator: Medicine, Motherhood, and Multiple Sclerosis.” “When I heard the words multiple sclerosis, I felt relieved that it wasn’t a brain tumor, but also scared because I remembered treating MS patients who were very disabled and I felt like all the doors to my future were slamming shut in my face. It was a terrifying feeling.”
What Doggett, who also had two young children, did not understand was how the diagnosis would affect her relationship with her partner. “MS severely affects marriages, all intimate relationships because it involves a higher level of stress and that certainly was true for my husband and me,” Doggett said. “Over time, that comes and goes. There have been times when his anxiety has been worse than mine, and I have had to tell him, ‘you don’t have permission for this to affect you more than me.'” Women are three times more likely to have MS than men. Like Doggett, after the initial shock of the diagnosis, many women also feel a sense of shame, wondering if they did something to cause this chronic illness, explained Heidi Crayton, M.D., a neurologist and medical director of the MS Center in the Washington, D.C., metropolitan area. There is also a cloud of uncertainty related to potential disability in the future, in addition to current physical impacts and concerns about how their partners will react. These burdens can create chaos in intimate relationships.
“The way in which MS affects a relationship depends a lot on how good the communication is in that relationship, levels of shame, and the willingness to confront the illness,” said Gayle Lewis, Ph.D., a psychologist and certified MS healthcare professional. “Because when you talk to someone about it, when you talk to your partner about it, everything becomes more real. When you say nothing and keep it a secret, you can almost pretend the illness doesn’t exist.” Doggett’s husband, whom she has been married to since she was 18, was with her when she received the diagnosis and supported her through subsequent treatments, flare-ups, and the roller coaster of emotions that followed. And they worked hard on their communication over the years. “I felt comfortable talking to all my loved ones about the diagnosis,” she said. “I know many people with MS can’t. There is still a lot of stigma associated with the illness. I was able to communicate with people over the phone or email, share the news, and was lucky to receive a lot of support.” But that is not always the case. “When I treat young women, they often come with their partners and the relationship is usually, ‘what can I do to help my partner?'” said Crayton. “But with older women, I often see them left alone because men don’t always stay.”
Romantic Relationships with MS
It is challenging enough to have open communication about chronic illnesses with a trusted partner, but it is even more challenging for women looking to start a relationship. They must strike a balance between disclosing too early to a potential partner before they are ready or waiting too long and making their potential partner feel deceived. “It can be a very scary feeling. And it can also be a very heavy burden to have to tell someone when you are not ready,” said Lewis. “But if you are asymptomatic like many people with relapsing-remitting MS, then you can tell your potential partner the type of MS you have, how it has been up to that point, and how it does or does not interfere with your daily life. And many potential partners say, ‘it’s okay, no problem.'” Ultimately, the right time to talk about it is when you feel comfortable. “Listen to your instincts,” said Crayton. “If you feel it’s the right time to tell someone, that’s great. If not, then don’t. It’s your personal information, and you can choose to disclose it or not and you can choose when to do so.”
How MS Can Affect Your Romantic Life
MS manifests differently for each person. Crayton calls it the “snowflake disease” because symptoms are unique to each individual. But depending on the location of lesions in the spine and brain, many women may experience numbness in the genital region, an inability to have orgasms, or spastic reactions in their limbs that can make sex difficult or uncomfortable. Fatigue, depression, and low libido can also cause a lack of interest in sex. The lack of bladder and bowel control is the most common concern for Crayton’s patients. “That causes a lot of anxiety in women,” she explained. “They think, ‘what if my bladder fails during sex?'”
The fear of such accidents and their partners’ reactions can prevent a woman from wanting to engage in sexual activity. “Having MS can make a woman feel ugly, deformed, disfigured, and undesirable, and that is not going to encourage someone to try to meet someone else or to be intimate with their partner,” explained Lewis. If you are sexually active, make sure to talk to your healthcare provider about contraceptive methods and if you plan to have children. Taking medication for MS does not affect your contraceptive options, but Crayton says some medications may be harmful to the fetus, so your treatment plan may change if you become pregnant.
How to Regain Your Intimacy When Living with MS
Symptoms or fears of MS do not have to affect your sex life. Here are five tips that will be helpful for your physical intimacy if you live with MS:
Communicate early and often. If certain positions do not work for you or if you want to take it slow due to fatigue, tell your partner and make the necessary changes. “Be as honest as possible,” said Lewis. “And if that doesn’t work, if a partner gives up, try again. That involves talking about it afterward, outside the bedroom. Talk about it when you are no longer trying to be intimate, in a safe place where you can be honest.” If communicating is difficult, consider couples’ therapy to get helpful strategies.
Don’t be afraid to laugh. There may be awkward situations, and being able to laugh about it could reduce tension, which, in turn, could facilitate communication. “People in successful relationships laugh a lot, and that brings them together,” said Crayton.
Redefine intimacy. People have preconceived notions of intimacy, but intimacy can be experienced in many ways. “It can be a massage, cuddling, or simply skin-to-skin contact. The key is connection,” said Crayton. “Connection is sometimes a more comfortable word than intimacy, which tends to have a very limited definition in people’s minds.”
Try a body mapping exercise. Lesions may change the way and places you want to be touched, so Lewis suggests a body mapping exercise to rediscover your desires. “Find a time and place where you have privacy where you can relax and find different ways to touch your body. Use your hand, a pen, a soft cloth and apply each one to touch yourself along your body very slowly and try to identify what feels good and what doesn’t.” You may discover a new part of your body that excites you. Then, show it to your partner.
In conclusion, the appropriate time to talk about it is when you feel comfortable. “Listen to your instincts,” said Crayton. “If you feel it’s the right time to tell someone, that’s great. If not, then don’t. It’s your personal information, and you can choose to disclose it or not and you can choose when to do so.”
