Relationships with friends, family and partners can change when you have MS because anything that alters you, even in very subtle ways, can alter how you interact with other people. How much impact MS has depends on many factors. Because the course of MS is individual and unpredictable, different symptoms and stages of the illness can cause unique difficulties.
If MS has caused significant disability, it creates different problems than when the disabilities are minimal, invisible, or episodic. Remember, however, that the amount of difficulty MS creates for people and relationships is not necessarily correlated to the degree of disability. Mild and moderate problems can also present significant challenges.
MS has varied effects on families at each stage of family development. Families grow and change and have different needs at different times. An interplay between family needs and MS-imposed limitations will determine how a family may alter.
The people in your life have unique strengths and struggles, so MS can affect each one differently. People close to you may be troubled by other issues than you or by similar issues, but at different times. People with MS frequently experience feelings of vulnerability, loss of control, and uncertainty. Their partners can experience these feelings too. Partners can also feel helpless and inadequate because they do not know how to be helpful. They may mourn the loss of companionship because activities that have always been done together have changed. They may experience a loss of freedom because of increased responsibilities. Partners often have difficulty recognizing they have needs too.
Children also experience losses when a parent has MS. They often feel a loss of parental attention because MS makes so many demands on their parents. Parents may be less playful because they are more tired and worried. Children may have more worries about safety–both for their parents and themselves. Parents are sometimes reluctant to talk about what is happening. This results in children experiencing insecurity and instability when they don’t know what is going on.
Friendships, including the friendship we feel for partners, spouses, and family, may be altered in subtle and not so subtle ways. Relationships may suffer from a lack of attention because there are so many other, seemingly more important demands. Emotional distance may develop when it feels like people simply do not understand or do not appear interested in how you feel. Common interest may change and roles may shift as people take on or give up responsibilities. People with MS sometimes become less involved in activities that they previously enjoyed either because the MS makes it physically more difficult, or because of feeling withdrawn and disinterested. This may result in a decrease of frequency of interaction with others and isolation.
Communication is critical when you are dealing with a constant stress. If you were having fire alarms twice a week at work, you would certainly insist on a reliable and effective public address system. So it is with MS. Communication skills become critical when dealing with MS because other people do not necessarily know what is going on with you and won’t know until you tell them. Talking about MS and the stresses it creates is difficult for many people. The issues that make MS hard to manage also make it hard to talk about. It is an elusive, unpredictable illness. It is the “it depends” disease. It is difficult to explain that today you are fine, but tomorrow you might not be able to go to the party, but “it all depends.”
There is no simple recipe for good communication. It takes time and patience. It also requires that you have some clarity about how you feel what you need, and what is still unclear for you. If you cannot talk about your MS, it will be difficult for others to do so. Emotional distress and confusion are predictable in the wake of MS. However, prolonged inability or unwillingness to talk about the issues can hamper effective coping. In such cases, a referral for counseling, an evaluation of depression, or a consultation with your spiritual advisor are types of interventions that are often recommended and can be helpful.
Sometimes, it is hard to talk about MS with people close to you because people are protective of each other. For example, it may be difficult for you to talk openly about how you feel, for fear of upsetting those close to you. Others may try to problem solve when you simply need them to listen, or may not want to talk about the depth of their feelings for fear of distressing you. When couples are unable to talk about important issues, the problems worsen, they don’t go away. When communication is difficult or becoming impossible, a marital therapist can often help identify the source of the problem and facilitate improved communication.
Children need reliable information that is geared to their age level. There are various educational materials available about MS for children. Reading these with your children can provide them with both information and reassurance. Again, keeping the line of communication open is important. Discussion about MS, like the discussions about where babies come from, are conversations you will have with your children more than once, the content changing as children mature.
It is true with all of humankind that when we are totally preoccupied with something, we assume the rest of the world is too. It can be very frustrating when the people around you do not seem to understand what is going on with you. Bear in mind that MS is not a common illness. Most of us didn’t know much about it until we had to learn. Do not assume that people around you know anything about MS in general and your MS in particular. Because most people use the acute illness model to organize their thinking about disease, they probably do expect you to “get better” and may assume you are “over it” if your symptoms are not visible. Sometimes people say things that seem insensitive or hurtful, and it may seem that they don’t care or believe you. This “insensitivity” is due more often to ignorance than lack of concern. Be willing to educate people about the unpredictable nature of MS and the subtleties of many of its symptoms. People generally want to be helpful, but often don’t know how. You can help them understand.