Life with MS

Keeping the Love Alive

By Laura McCatty, RN, BSN, MSCN and Mark McCatty

Having good relationships, especially with those closest to us, is essential for good physical and mental health. A lack of strong, intimate relationships is associated with depression, cognitive decline, and increased mortality. A study of the general population found that a lack of strong relationships increased the risk of premature death roughly comparable to smoking up to 15 cigarettes a day.

Positive personal relationships have a high trust component. Now, that does not mean that every decision or action by the other person is considered favorable by both partners; however, each partner should believe that no ill intent is meant. Consider the other when making decisions and taking actions. In positive relationships, there is consistent collaboration toward common goals. There is a willingness to be open and vulnerable and to admit when mistakes are made.

Life sometimes throws challenges into the mix. We experience stress from daily demands and limitations on our abilities, and multiple sclerosis only makes matters worse. We can become angry and irritated with the ones we love. Anger is a secondary emotion coming from three main sources: hurt, fear, or missed expectations. So, if we want to continue to experience positive relationships, we should avoid causing others pain or fear. A first step can be developing open communication to avoid misunderstandings. This helps to establish and maintain a clear understanding about expectations.

This is especially true when partners are dealing with a disease as gripping as MS. This unwanted partner in a relationship shows up at unexpected times. It can change plans at a moment’s notice. The fact that one “looks so good” outwardly can bring misunderstandings to relationships. It is helpful to talk about these issues in advance with the well partner and how best to manage when these situations arise.

Intimacy can bring anxiety. Intimacy does not have to mean the sexual act itself. Talk about what helps each feel loved. Some people avoid intimate relationships because they fear the unexpected may occur. It helps to think through what is the worst that would occur, and then plan how to manage. 

MS can cause issues such as decreased sensation, pain, spasms and erectile dysfunction. Fatigue, depression, and decreased libido can cause intimacy to become a stranger. There are some simple tips. Consider sex at a time of day that is best for both, perhaps the morning. Try something different to soothe pain such as medications or a “bag of frozen peas,” which Randy Schapiro, M.D. mentions can be helpful. To increase sensation, take the time to have fun to warm up for love.

Make an appointment for love hours before the event to get your brain engaged and excited. Turn on your music to feel sexy, set the mood, and utilize sex toys or vibrators. Take this uninterrupted time, and if it doesn’t turn out perfectly, try something different next time. Laugh at yourselves and don’t give up.

“Don’t forget to look at each other often as though it were the first or last time.” 
-- Corrine De Winter.

Although it can be difficult, many are going through similar issues. Identify the goals you share. Formulate a plan. Keep working on your goals together. Although it can be embarrassing, make a specific appointment to discuss solutions with your MS specialized health professional. You are worth it!

When trying to maintain positive, intimate relationships, it is important to understand what the definition of intimacy is for each partner. Each of us may experience that special closeness differently from our partner. Perhaps it’s holding each other with gentle caresses, 20-second hugs throughout the day, or even doing the dishes. Human touch is so important, especially in a loving relationship. 

In his book, The Five Love Languages, Gary Chapman describes how each of us feels love (and intimacy). A key for keeping relationships intimate is to understand the language that your partner “speaks” when they show love. It is the same language that they “listen” for to receive loving gestures. The book, The Five Love Languages, speaks about how you give and receive love: words of affirmation, quality time, receiving gifts, acts of service, and physical touch. 

“Oh, the comfort, the inexpressible comfort of feeling safe with a person, having neither to weigh thoughts nor measure words, but pouring them all right out, just as they are, chaff and grain together; certain that a faithful hand will take and sift them, keep what is worth keeping, and then with a breath of kindness blow the rest away.”
-- Dinah Maria Mulock Craik

Like most good things in life, intimacy does not happen accidentally. Make it a priority and plan to develop and nurture intimacy. There are a few simple steps that anyone can take to improve the quality of relationships. The steps may be simple, but they are not easy. These steps require time and effort, which are not always easy unless it becomes a priority. Here are five steps to take:

1. Promote time together as a priority. It is easy to become distracted by daily demands and lose our connection with those important to us. Be intentional about spending quality time with each other without distractions. It is as simple as going out for coffee or sitting closely to watch a favorite movie together. Sometimes it means just sitting quietly to really listen when the other person is ready to talk. Make an appointment or “date” with each other.

2. Nurture open and positive communication. Jack Burks, M.D., a noted authority on MS, speaks about the importance of “framing the discussion” when having conversations with your healthcare team. The value from this frank conversation is to clarify expectations for all parties involved. This conversation model is equally important for personal relationships. Openly discuss challenges and concerns in a positive way. This provides opportunities to make adjustments that keep everyone working on the relationship. Greater insight into the other person, stronger relationships, and progress toward common goals are the positive outcomes from this type of communication.

3. Celebrate your differences. Each of us is different; yet, when we think back, that was probably one of the things that attracted us in the beginning. Over time, those differences can become an annoyance. It is important to remind ourselves that strong relationships succeed because of our combined strengths. Each person brings a set of talents to the relationship. It is important to acknowledge those differences and learn how to use them for the benefit of both.

4. Stimulate romance in your relationship. Like the old song goes, “little things mean a lot.” Romance does not have to be a big event. Breaking out of daily routine can be exciting and romantic. Understanding and speaking the love language of your partner is important. What can I do to make him/her feel loved?

5. Forgive ourselves. Forgive others. Another key to intimacy lies in our ability to give each other grace by letting the human tendency to err slip through our fingers like sand. When we lose intimacy, it’s easy to develop a negative image of our partner. Let those negative thoughts go. Being committed and intentional about spending quality time together, developing a practice of sharing quality communication, appreciating our differences, and making romance a priority can lighten the burdens that daily life brings. This may not be the cure for a disease like MS, but it can make those symptoms easier to tolerate when one feels loved.

Keeping the love in your life is good for your health – mind, body, and spirit. We benefit from having someone support us during hard times, and share our joy in the good. It can be difficult holding on to intimacy in a relationship. It does take effort. You get tremendous value. The delight and the comfort from your relationship is worth the effort. Make it a priority! 
Laura McCatty is an MS-certified registered nurse with 14 years of experience helping people with MS. Her passion is to educate people about living well with MS.
Mark McCatty is an organizational development consultant/trainer with extensive experience inoperations management. His leadership and organizational development consulting hashelped numerous organizations meet the challenges of creating high-involvement work environments.

Both Laura and Mark are past presenters for the MSF Cruise for a Cause®.