Intimacy and Multiple Sclerosis

One of the benefits of being a member of an extraordinary blogging community is meeting strong, vibrant women who write about a wide array of topics. One niche that I admittedly shy away from discussing, but one that is extremely important for the MS community to discuss, is the topic of sexuality.

Sexuality, dating, and post-divorce issues

When the team at MultipleSclerosis.net asked for topics that have not adequately been addressed, I immediately thought of my friend Walker Thornton. Walker has become a rockstar writer with her informative articles about sexuality, dating, and post-divorce issues. Her vast knowledge on the subject combined with her tasteful writing have helped countless readers reach a better understanding of issues surrounding sexuality.

Interviewing Walker Thornton

I recently interviewed Walker about intimacy, sexuality, and MS.

Cathy: Tell us a little about yourself, the name of your blog and what you write about.

Walker: I am a freelance writer of 5 years now, with a background in nonprofit work. I started writing personal stories about dating and post-divorce, and from there I began writing about sexuality. My website is WalkerThornton.com where I see a real need for open conversation about sexuality in midlife, specifically, but at all stages of life, we need to be talking about ourselves as sexual beings. I write for a broad audience, but I have personal experience with multiple sclerosis and occasionally write about caregiving. My ex-husband had MS. After our divorce, I was his caregiver for about 10 years.

Intimacy and multiple sclerosis

Cathy: Can you talk a little about intimacy and how it relates to patients with Multiple Sclerosis?

Men with MS

Walker: I think the topic of intimacy and MS applies to both genders but creates different issues, depending on which gender. Because men are more intercourse-focused, when the disease begins to affect their ability to perform it may feel like the end of a sex life.

Women with MS

Women can experience issues with their sexuality but still be capable of having sex—satisfaction being a different story. According to a report prepared by the New Zealand MS Society, it is known that approximately 80% of women with MS experience sexual dysfunction at some time during the course of the disease. Some women just stop engaging in sexual relations, while others (approximately 40%) have reported that participating in sexual relations is significantly unsatisfactory.¹

Symptoms most commonly reported include:

• Reduced genital sensation (48%):
• Reduced vaginal lubrication and difficulty with arousal (35%);
• Difficulty or inability reaching orgasm (72%).”

Challenges for couples

The challenges of intimacy for couples with MS varies in much the same way that challenges present themselves for couples who are not living with a chronic illness. Only it’s intensified by all the other complications of the disease. Fatigue, limited mobility, and the accompanying loss of autonomy, along with stress and normal daily challenges create physical and emotional roadblocks to a healthy sex life.

Talking about desire and intimacy

Cathy: Do you have any thoughts, suggestions or ideas about educating people and increasing their awareness about issues with intimacy and MS?

Walker: I would urge couples to find a way to talk about what they are experiencing. One of the biggest challenges for me was my husband’s reluctance to talk about his emotions or the challenges he faced sexually. I could see his frustration but I don’t think I fully understood the feeling that his masculinity was being impacted by the loss of sensation in his lower body.

If a couple is talking about desire and intimacy they are then able to begin thinking creatively about how to meet each other’s needs. MS, aging, medication side effects and other stressors can lead to changes in sexual desire. It will require both parties to rethink intimacy and find new ways of pleasing each other. There are very capable sex therapists that work with couples that want to work on issues around intimacy. They can help facilitate conversations and suggest adaptive techniques or exercises to expand sexual intimacy. The American Association of Sexuality Educators, Counselors and Therapists (AASECT) have a list of certified therapists by state.

Advice: communicate

Cathy: Can you offer any advice?

Walker: The advice I offer anyone who comes to me with a question is to communicate with your partner. It takes work to sustain a relationship; a relationship where one partner has MS requires even more work. Fatigue and other symptoms, body image, concerns about how your partner perceives you, stress and all the other challenges of day-to-day life will make a fulfilling sex life more complicated — but the effort is worth it. Read up on intimacy and disabilities, check out books on sensuality, and redefine what it means to be intimate for you. There are options for achieving pleasure, orgasmic or not, that can be brought into your bedroom. Begin to think creatively about ways to give and receive pleasure beyond intercourse. This article I wrote, Does Chronic Illness Affect Your Sex Life? offers resources and helpful suggestions.

Resources for information

Cathy: Are there any links or resources you can suggest for more information?

Walker:

1. Someone Like Me: Intimacy, Sexuality, and MS
2. The Caregiver Space: Love and Intimacy in Caregiving has links to various websites.

Finding a balance

Cathy: Do you have any other thoughts or comments on intimacy and MS?

Walker: Being the ‘well’ one and/or the caregiver is hard. And, being cared for changes the power dynamic in a relationship. But it’s important to find a balance that nurtures both parties. I think intimacy is essential to a strong relationship — staying connected through touch, affection, and sexual activity can be a wonderful asset to a relationship. I often hear people say, I can live without sex. I question whether that is really the case or whether giving it up seems easier than confronting their sexual problems. When you’re living with a disability, yours or your partners, don’t let that part of your life slip away. We can be sexual beings in spite of a disability.

For more from Walker, you can check out her blog and article “Does Chronic Illness Affect Your Sex Life?”