If anything can impact a marriage (for good or bad) it is multiple sclerosis. I was diagnosed with MS just a few months after getting engaged. The doctor that delivered the news was heavy into theatrics and seriously lacking in bedside manner. As he whipped out the MRI film with the unmistakable glowing spots on my brain, my fiance let out a gasp and I honestly worried more about what this diagnosis would mean for him than for me going forward.
I gave him several chances to call off the engagement or to take time to think about it (some of these were unforgettable steroid-induced dramatic performances), but he stuck with me.
As corny as it may sound, I truly believe that the MS has made our marriage strong in so many ways. We have made some of the best decisions about our lives, our jobs, starting a family and what our priorities really are because MS has encouraged us to think about what we really want our lives to be like now, rather than putting things off. We know that things can change at any time and some of these changes might be out of our control, especially things that are related to my disability or energy level.
The lesson here is: MS can radically alter a marriage. People with MS may find that they are no longer able to do everything they planned when they got married. Spouses of people with MS may find they must take on more responsibility, or even assume a caregiver role. However, through open, honest communication and good planning, a marriage can even be strengthened by the challenges of MS.
The Caregiver Role
MS-related disability and symptoms can force the spouse of someone with MS into a caregiver role. Whether it is helping with basic mobility or taking over household and other duties due to fatigue, much of the burden of MS may fall on a spouse, including:
- Giving injections and medications
- Helping to protect their spouse’s energy
- Taking on more household chores
- Becoming the primary breadwinner
- Taking on more parenting tasks
- Helping their spouse avoid stress
This role can be a major shift in the relationship. It is important to balance the marriage aspects of the relationship with the caregiving aspects. The caregiver role often shifts the couple into a parent-child relationship that is unhealthy in a marriage. Caregivers and spouses with MS must communicate openly, honestly and often to assure a successful adaption of a marriage to MS.
Sex, Intimacy and MS
MS can cause a host of sexual problems in both men and women. Many of these problems can be addressed with medications, sexual aids (such as lubricants) and other solutions. The key to a healthy sex life is the same as with all couples – open, honest communication.
Pregnancy and MS
If a woman has MS, this does not change her ability to have a healthy, successful pregnancy. In fact, pregnancy often provides a woman temporary relief from her MS symptoms, allowing for a medication-free pregnancy. Because all current MS disease-modifying medications cannot be used while pregnant or while trying to be pregnant, the main concern is the time spent trying to get pregnant. During this time, the woman cannot be on MS medication and the chance of relapses increases.
Parenting and MS
MS can create extra challenges in parenting. The parent with MS may not have the energy to fulfill all parenting tasks as he or she would like to. Periods of relapse and worsening of symptoms can impact family plans and daily routines. Good planning and developing a network of people who can help in a pinch will greatly reduce the negative effects of MS on parenting.
Financial concerns in MS marriages can also arise. The spouse with MS may be unable to work, thereby reducing the overall income possibilities. In addition, medical care, medications and other necessities may impose added costs for the couple. Good financial planning and asking for help when needed are essential.
Information and Understanding
Both spouses must be well-informed about the course of MS, possible symptoms and actions to take. Many MS symptoms are invisible and difficult to recognize. Cognitive symptoms can lead to miscommunication, misunderstandings and tension in the marriage. Fatigue can lead to resentment and stress. By recognizing memory loss, confusion, fatigue and the other invisible MS symptoms as a consequence of the disease, spouses can become more understanding and accepting. Each spouse must also be well-informed about the latest therapies and potentially helpful complementary/alternative approaches to addressing MS symptoms. Having this information ready will help in a time of crisis.
Educating Families, Friends and Co-workers
When people hear “multiple sclerosis,” they often immediately think of wheelchairs. If the spouse with MS is ambulatory and is suffering mostly from “invisible symptoms” family, friends and co-workers may not understand how the illness affects your lives. Educating people about MS is important to generating appropriate responses and support. Unfortunately, this role will fall largely on the people with MS and their spouses. Develop a good 10-minute explanation of MS and why it impacts your life. Be articulate and clear. People don’t mean to be insensitive, they are just not well-informed.
No matter what the type of MS or the severity, there are many things about MS that you can strategize how to deal with, including relapses, a worsening of symptoms in times of stress and lower endurance. There are also a host of symptoms that might come and go. By planning for these situations, you can greatly reduce the stress of MS on the marriage. Have plans for times when the spouse with MS needs to rest. Have a plan in place for relapses. Realize that the future might shift and change and be as prepared as you can to reduce the stress from this unpredictable disease.
Nancy Fleming Courts, Amanda N. Newton, Linda J. McNeal. Husbands and Wives Living with Multiple Sclerosis. Journal of Neuroscience Nursing, February 2005. Volume 37, Number 1.