Life with MS

Keeping Romance Alive

By MSF Staff and reviewed by the MSF Medical Advisory Board
Editor's Note: This article contains frank discussion of the ways in which MS can affect intimacy and sexuality. While open communication about sexual function may be embarrising or uncomfortable for some people, we are all sexual beings with the right to sexual expression and satisfaction. It is our hope that this information will educate and empower you to seek out the many options available to overcome the obstacles presented by MS in relation to sexual intimacy.
Valentine’s Day is a nice reminder that we need to keep romance alive in our relationships. It’s normal for everyone, with or without MS, to occasionally experience sexual difficulties. However, for people with MS, many additional hurdles can get in the way of having a satisfying sex life. Up to 90 percent of men and 70 percent of women with MS report having some type of sexual dysfunction. This doesn’t mean that you should no longer expect to experience sexual pleasure just because you have MS; it just means that you may have to discover new ways to enhance your sexual experience. 
Although it can be awkward, couples should make every effort to discuss their sexual difficulties. If you simply shy away from physical intimacy or avoid sex, your partner may assume you’re no longer interested in him or her and may not realize that MS-related physical or emotional problems are to blame.
Once sexual issues are openly discussed, couples can begin to work through them and begin to enjoy intimacy again. Depression, which is often an obstacle, can be treated with medication and/or counseling. Erectile dysfunction can be treated with medications such as Viagra®, Levitra®, or Cialis®. If fatigue is an issue, changing the time of day that you have sex can help increase desire. The use of lubricants, such as Astroglide or KY Jelly can help alleviate vaginal dryness. However, most women who use lubricants don’t use sufficient amounts. If diminished sensation is a problem, stimulation can be increased orally or with a mechanical vibrator.
I often advise couples to experiment with ways to express their sexual needs that aren’t genital-focused. You and your partner may wish to agree that you won’t attempt reaching an orgasm or having intercourse for a few weeks. Sometimes teasing and foreplay are better ways to rekindle sparks. Try just kissing and touching each other without removing any clothing. Remember how passionate you felt when you were first getting to know your partner, but hadn’t actually had sex? Re-creating this experience can be a wonderful way to encourage intimacy and recharge your libido.
Keep in mind that pleasing each other may not necessarily mean achieving an orgasm. Hugging, cuddling, giving each other a massage or foot rub can be satisfying and erotic. You and your partner are in control of how you want to connect and feel intimate. Simply looking into each other’s eyes and holding hands can be enough to feel loved and desired. Creativity, a sense of humor, fantasy, and flexibility will carry you a long way as you explore ways to acknowledge your sexual self.
Because MS symptoms can change the way your body responds to stimulation, it’s helpful to let your partner know how and where you like to be touched. Don’t hesitate to say what feels good. Your physical desires and pleasures may be different now, and you will need to let your lover know what he or she can do to please the new you.
Of course, first you must know how you want to be touched. In the MSF booklet Intimacy and Sexuality with Multiple Sclerosis, Dr. Frederick Foley explains the concept of body mapping, a self-exploration technique recommended to help you rediscover your own body and what feels good. By learning what feels pleasurable to you, you will then be able to communicate that to your partner.
Setting one night aside as a date night is a fun way to spice up your love life. Make the evening special and be sure that the focus is just on each other. No kids or friends can be included. Do something interesting and out of the ordinary. Go for a picnic at a local lake or beach, get an ice-cream sundae, take a walk in the woods, or attend a concert in the park. If you want to stay at home, enjoy a candle-lit dinner, play romantic music, slow dance together. Really take an interest in your partner. Ask questions about how they’re doing and what they’re feeling. Slow things down so that the world is just about the two of you for a few hours.
Sex is in your head
It’s often said that sex is more about what happens above the belt than below it. Our thoughts and feelings are what drive us sexually. It’s not unusual for someone with MS to lose touch with their sexuality as they battle physical challenges. If your self-image changes because of illness and your self-esteem suffers, you may no longer feel like a sexual being. When this happens, your sex drive can falter, and you will need to make an effort to recharge sexually. Talking with your partner about your insecurities and the changes that may be going on with you is a good first step. Give your partner the chance to reassure you and express how much he or she still desires you. Hearing that you are wanted is a potent aphrodisiac.
Since much of our sexual motivation originates in our mind, the use of fantasy can often help stimulate sexual desire. Reading romance novels or watching sexy movies may be just what you need to get aroused. If you want a little inspiration, check out 101 Nights of Grrreat Sex: Secret Sealed Seductions for Fun Loving Couples, by Laura Corn. This book is full of creative ideas to get your imagination going; the rest is up to you.
When care partner is lover
“My husband sees me as someone he needs to take care of. He has become more like a parent than a lover. I already have parents. I need to feel like a woman again,” says Anne, a 53-year-old woman who has lived with MS for 20 years.
A common dilemma for caregivers who are also spouses is how to transition from one role to the other. When you’re helping a loved one with daily activities such as bathing, dressing, or walking, it can be confusing to then see them as a lover or sexual being. Frequently, the individual who requires a great deal of physical care falls into a dependent role and the caregiver does become like a parent. This can cause both partners to experience sexual confusion. Caregivers, particularly men, may fear hurting their partner or making their symptoms worse during love-making so they avoid making sexual overtures in an effort to “protect” their loved one. Again, these issues need to be discussed and worked through.
Couples who are able to successfully transition between their roles of caregiver, care-receiver and lover tend to strive for balance in their lives. For instance, they participate in activities together that have nothing to do with MS. This reminds couples that they’re partners first and each brings value to the relationship. 
Hiring a home-health aide or asking a relative or friend to help with some of the more intimate caregiving responsibilities, such as bathing and dressing, helps both partners maintain separate identities. This can reduce stress, resentment, and burnout.
When couples recognize that MS is a medical condition that needs to be dealt with, not a problem that defines the relationship, they’re more likely to relate to each other as equals and maintain a healthy sexual relationship.
How you interpret your sex life is up to you and your partner. You’re free to reinvent your sexual relationship so that it feels right for you both. The important thing is that you maintain trust and physical intimacy on some level and keep the lines of communication open.
(Last reviewed 7/2009)