Life with MS

The answer is…YES! By understanding how the disease may affect your relationship and each other, learning how to cope with the added stress it brings, and by putting preventive measures in place, your relationship may not only survive, but may actually strengthen as you unite to fight a common enemy.
 
The couples who report the most success in growing their relationship in a positive direction after the MS diagnosis are the ones who are flexible and creative in coping with the unpredictability and changing nature of the disease. They know that their roles within the partnership are often in flux, and that they must learn to communicate honestly and effectively about their feelings while maintaining a level of respect and empathy for one another.
 
After the diagnosis
 
Fear of being abandoned by their partner and worry of becoming a burden are two natural reactions that may occur when someone learns they have MS. If these concerns are acted upon instead of voiced, the relationship may become derailed.
 
“I was certain he would leave me, and the anxiety that it caused drove me crazy. But I never talked about it. One day, I got tired of waiting for him to leave me, so I left him,” says Maria Sanchez.*
 
Her husband’s relentless efforts to get her to return home coupled with their frank discussions allayed her fears. Today they are preparing to celebrate 25 years of marriage, 20 with MS.
 
Alice Simon*, now in her 60s, has spent the last two decades living with MS and trying to handpick a “healthy mate” for her husband, despite his protests. Her husband, Greg, still just rolls his eyes, shakes his head, smiles, and gives her a reassuring hug.
 
Research does not validate these fears of abandonment. The divorce rate does not seem to be higher in the MS community, according to surveys done in the last few years. However, togetherness by itself is no indication of relationship well-being. Maintaining harmony and fulfillment is quite another challenge, one that requires plenty of planning and effort when MS is involved.
 
The fears of the partner who accepts the role of primary caregiver should be addressed as well. Often, these partners’ first concerns are about their ability to sustain the required level of caretaking over the long haul as well as how to maintain a balance in their own lives.
 
“In the beginning, I was so concerned about doing everything so perfectly and completely that I wore myself out. And then I was no good at taking care of anyone, not even myself,” says one caregiver spouse. 
 
Remain open to role changes
 
The couple that successfully negotiates the demands of MS is well aware that symptom flare-ups and exacerbations may require periodic role adaptations. A February 2005 study in the Journal of Neuroscience Nursing found that healthy partners often shift roles the most. While women tend to focus on keeping their husbands involved, functioning, and independent, men typically try to protect their wives’ energy. They learn to give injections with the least amount of bruising and pain, take over household chores, and accompany their wives to medical appointments.
 
These role changes can bring about potential hazards. Although MS can conjure up supportive and nurturing qualities in partners, caregiving should never evolve into pity. Also, partners should not sacrifice their own needs and desires so much that they lose themselves in their spouse's illness. When this happens, the relationship itself dies. The caring partner should maintain personal, appropriate boundaries to refrain from overprotectiveness and to preserve the independence of both parties.
 
It is important to acknowledge that the care partner also experiences losses in terms of role and relationship changes, career and financial difficulties, and reduced physical intimacy. Each of these issues places additional strain on the relationship.
 
Helpful actions to take
 
Communicate, and then communicate some more. Good communication, essential for any healthy relationship, becomes even more critical when MS is in the picture. Keeping feelings and emotions inside can lead to misunderstandings and assumptions that may poison even the best of unions. Because MS commonly affects sexual relations, it is especially important to be open and honest when discussing physical intimacy needs with your partner so that you can both make the necessary adjustments that will lead to mutual fulfillment.
 
Don’t be afraid to ask for help from qualified mental health professionals and sexual therapists if needed. Many couples report that such therapy helps them weed out other issues that complicated their relationship even before MS came into play. Books and resources from MS organizations and centers also provide expert advice.
 
And finally, be proactive by laying a good foundation for caring. Pat Kennedy, RN, CNP, MSCN, is a MS nurse educator at Can Do Multiple Sclerosis in Colorado who has worked extensively with couples dealing with MS. She offers the following advice on how to keep a loving attitude alive all year long:
 
Live well
 
Regardless of the reason, whether it’s being too busy, being grumpy, sad or noncommunicative, being overwhelmed or dealing with MS, we seem to forget to live our lives well. Many will say that they can’t; they have too many things on their minds or too many troubles. MS takes up too much of their time. We all can, in fact, find time and strength to make changes, some small, to begin to live our lives better.
 
Some of this pertains to lifestyle. It means finding things in your life that bring meaning to you and that give you a reason to get up in the morning. When your loved one comes home or you have some quiet time together, you’ll have things to talk about, to share, to discuss and to celebrate. Make plans for activities that will bring you pleasure as well as bring pleasure for your support partner.
 
Laugh often
 
Let’s face it; life is not always a comedy show. All of us face tough issues, health problems, job loss, home loss, and problems with our kids. But facing adversity with some humor is a lifesaver. Laughter must be well-placed and shared by others. It is not meant to belittle or to lessen the importance of someone’s feelings. There are some really silly things that happen day-to-day, and the ability to laugh about them can lighten the load.
 
Couples often feel that they are so busy dealing with the “important stuff” that they don’t have time to go to (or rent) a funny movie, to play a game, to dress up for Halloween, or to read a book together. Spending time with your girlfriends and giggling or gossiping, or spending time with the guys at a game or a coffee shop, can be a great experience. It also allows you to share some of the mirth with your partner or family, lightening the mood for all.
 
Love much
 
Living well and laughing often will help you strengthen the relationship with your partner. Both will contribute to your intimacy staying fresh. Being emotionally available to each other promotes sharing that innermost part of you. These include thoughts, feelings, fears, and failures. They also include hopes, dreams, and successes. 
 
We need to know what we can give, what words or behaviors we can’t or won’t accept and what we want from our partners. Couples need to keep touching each other by being affectionate, demonstrating feelings, and offering and receiving romantic gestures. Intimacy is often a learned skill but without intimacy in a relationship, the rest is shallow. Intimacy is an investment in your relationship. It’s an investment that we all have to keep working on, through the good times and bad. We have to nurture each other and care for each other’s well being. Then every day can be like Valentine’s Day.
 
*Names were changed for privacy
 
(Last reviewed 11/2010)