By Tom Scott

In every healthy marriage and relationship, intimacy plays an important role. For those living with a disability, such as multiple sclerosis (MS), maintaining a satisfying sex life can be an arduous task. But there are ways to return to the level of intimacy you once knew.

“I think MS, especially for women who are diagnosed, can affect your psyche,” says Mimi Mosher, who, through the National Multiple Sclerosis Society, offers intimacy guidance to patients. “Many women, at times, feel unattractive and experience mobility issues and various symptoms of the disease that hurt their self-confidence. First and foremost you really need to restructure who you are and become comfortable in your own skin before you can start to address intimacy and relationship-related issues.”

Frustration
Mosher was diagnosed with progressive MS at the age of 24, gradually losing her ability to walk and witnessing a steep decline in her energy and stamina. Her initial MS symptoms were vision-related: She unexpectedly started losing her eye site. After undergoing a barrage of tests, doctors gave her a 30% chance of not having MS.

“I took my chances with those odds and had no other symptoms for nine years,” says Mosher, who is now legally blind and resides in Virginia with her husband and son. “Then I began losing my balance and coordination. I started having to use a cane to walk. I was very much in a weird state of denial.”

Mosher projected much of her frustration on her husband Jonathan, which put stress on their relationship. “Jonathan initially took the brunt of this burden because he was the only one I was talking to about my MS. I was dumping everything on him.”

Mosher also began trying to measure herself up to other women and compared her new life with MS to her old life when she was free of its symptoms. “After my diagnosis I felt like I lost part of my femininity no matter what my husband said. I lost sight of myself.”

Despite these feelings, she was determined to remain connected with Jonathan and to continue to explore and enjoy their ability to be intimate. Mosher sought support through a therapist, and believes others with MS should consider this option. “Get your own therapy or an objective party or support group to talk to so that you could start feeling good about yourself again in your ‘new’ body,” she adds. “Then you can begin attending couple’s counseling to rekindle things between you and your spouse or partner.”

New Ways to be Intimate
After regaining her self-confidence and accepting her diagnosis, Mosher started to explore new ways to be intimate with her husband, focusing less on the actual act of sex and more on the process. Mosher uses a four-point strategy (below) to help people with MS remain intimate using the knowledge she gained from her own journey toward intimacy after her diagnosis. “I quickly realized there weren’t many resources and little support for people with MS that had intimacy-related concerns and I felt that my own experiences could help others who were in similar situations.”

Although MS has greatly impaired her vision, Mosher also continues to pursue her passion for painting.

Communicating, sharing new experiences, and maintaining a connection with your partner or spouse are all important aspects of intimacy Mosher outlines in her four-point strategy, as is willingness to continually experiment and try new things, especially during exacerbations or flare-ups of MS symptoms. “It’s a never-ending process because MS is very tricky. You have to learn to roll with the punches and continually reinvent yourself if you want to maintain a healthy and intimate relationship,” Mosher says.

Besides psycho-social challenges, the physical challenges of MS also factor into attaining a high level of intimacy with your spouse or partner. MS presents numerous physical obstacles in the bedroom, including decreased or altered sensation, inability to reach orgasm, impaired mobility, decrease in coordination, and so forth. It’s understandable why individuals with MS may find it difficult to maintain an intimate connection with their spouse or partner with all of these symptoms occurring.

“There may be issues around intimacy related to issues such as spasticity, weakness, pain or other physical symptoms,” says Brian Hutchinson, PT, MSCS, CEO of The Huega Center for Multiple Sclerosis in Colorado. “It is important to talk about these issues with your health care provider and your partner. Many times, managing the symptoms may decrease the barriers to sex. Another significant issue may be fatigue. In the case of fatigue being the barrier to intimacy, energy conservation techniques are crucial which includes planning and taking advantage of times of the day when you have more energy. Managing symptoms along with good communication are imperative.”

Return the Romance
To begin solving these underlying issues and return the romance to your relationship, you should speak to your health care professional and get a full medical assessment. “Being aware of the latest treatments to slow progression as well as manage symptoms are ways in which one can improve intimacy,” Hutchinson adds. “Communication with your partner and health care providers about these topics is extremely important as there may be available treatments or strategies which can improve intimacy.”

It is a good idea to be open and honest with your doctor. Discuss the physical problems and symptoms you are experiencing and any medications you are taking. If you are not comfortable talking to your current physician about these topics, you may want to find one you feel more at ease with or who specializes in sexual or intimacy-related issues.

Another unique challenge for people living with MS is that their primary caregivers are often also their spouses or partners. Many people who care for a spouse or partner with MS may have a difficult time separating the role of caregiver, just as their spouse or partner with MS may have difficulties switching from receiving care to the role of a lover. In Mosher’s situation, Jonathan has gradually played more of a caregiving role in the last few years as her MS has progressed, but the couple has found ways to cope. “You need to keep your sense of humor and be able to laugh with each other. No matter how hard things may become it’s important to keep things light and enjoy each other and your relationship. Life is too short.”

Four-Point Strategy to Remain Intimate

1. Self-confidence is key. MS and mobility loss can cause feelings of inadequacy and embarrassment that must be overcome for partners to remain intimate. Couples should discuss all issues associated with sex openly-perhaps in conjunction with a therapist.

2. When it comes to sex, it’s not the destination that counts-it’s the journey. When someone loses the ability to move freely, the mechanics of sex invariably must change. Traditional approaches to intimacy may be uncomfortable or impossible. Understanding limits and using experimentation are essential. To continue to be intimate, focus more on the process of physical intimacy rather than the end result. This mindset helps to minimize performance anxieties and demonstrates how to continue to enjoy intimacy.

3. Make a Shopping List. Routinely talk to your doctor about products that could help improve sex. Individually or together, couples should speak candidly with a doctor about options that can enhance sexual fulfillment at any stage of disease progression. You can also get great ideas from different online resources including chat rooms.

4. Practice makes perfect, and don’t be afraid if some ideas don’t work. As health changes, it is essential to continually experiment and refine technique to remain intimate. When one idea does not work, learn from the experience and try another.

Note: This article originally appeared in a past edition of United Spinal Association’s membership magazine Action. To check out articles on a wide-range of disability related topics, please visit Action’s Web site.

Photos courtesy of Mimi and Jonathan Mosher.

This entry was posted on Friday, June 19th, 2009 at 9:59 am and is filed under All Articles. You can follow any responses to this entry through the RSS 2.0 feed.