11 November Communication With Family Library

Sharing information about MS with family members isn’t always easy or straightforward. Different family members want and need different kinds of information; people sometimes have preconceived ideas about what MS is and what you should be doing to manage it; some family members are better able than others to keep information private if you ask them to. In addition, the information you provide needs to change as the disease changes or affects you in different ways. So it’s a good idea to have a strategy in mind for how to deal with the information needs of the people in your family.

Laying a Strong Foundation

When one person in a couple has MS, it’s important for both members of the couple to share a communication plan. The person with MS and her or his support partner need to be able to trust one another to communicate with others – so that neither ever has to worry about what the other is saying, and no secrets ever need to be kept. So check in with each other on a regular basis to make sure that you’re in agreement about the information you’re sharing with others.

Sharing More or Less Information

Many people ask “How’s it going” or “How are you feeling” or “How’s your wife [husband] doing?” Some of those people are just being cordial or polite, and don’t really want or need all the details. Others – those who are closer to you, who care deeply about how you’re doing and want to be helpful and involved – are ready to hear as much as you care to tell them. So it’s important to decide for yourself or as a couple, which people fall into which group (for example, parents, siblings, and children, vs. more extended family members) and how you want to share information with them. Different families have different strategies. Some prefer to respond to questions as they arise; other families agree that they will give periodic updates when there are changes or issues to report. Whatever works for you and your family members is fine as long as you have a set of shared expectations.

Talking with Your Kids about MS

As children grow, their needs for information change. This means that talking about MS is a little like talking about sex. You start simple – asking if they have any questions and providing age-appropriate information that they can understand and digest, and then provide more information as your children get older and their questions become more complex. Since different children learn differently, you may decide to read a book about MS, talk in a family meeting, or take your kids to a children’s MS activity sponsored by one of the MS advocacy groups. Whatever strategy you choose, it’s important to keep the conversations going. When you don’t know the answer (for example, “Will you end up in a wheelchair? Or “What’s going to happen?”), it’s perfectly fine to say you don’t know – that MS is pretty unpredictable. You can, however, be very clear about a few things – that they can’t catch MS from you, they didn’t cause it to happen (even if they misbehave sometimes), you are working with your doctor to manage your MS, and you will always take care of them. Either or both parents can do the talking as long as your messages are clear and consistent to avoid confusion.

Helping Family Members Understand the “Invisible” Symptoms of MS

Children and adults find it easier to understand the symptoms they can see – problems with walking or balance or falls, for example. However, they find it much more difficult to understand the symptoms they can’t see – like fatigue, mood changes, and cognitive problems. They need to understand that the overwhelming fatigue that’s so common in MS is different from their fatigue – that taking a nap may not do the trick, that when a person with MS hits a wall, it’s time to stop and rest. Most importantly, they need to hear that cancelling a plan, or not being able to sit through a baseball game or a picnic doesn’t mean that the person with MS doesn’t care or doesn’t want to be there.

Problems with mood, including irritability, depression, and anxiety, can be equally difficult for people to understand. They need to know that depression is one of the most common symptoms of MS, that irritability can be caused by depression as well as fatigue, and that managing moods is just one more aspect of MS that needs care and attention.

The cognitive changes that occur in MS can also be confusing to other people. If the person with MS is experiencing memory problems, slowed thinking, or difficulty managing plans and commitments, others may take it personally or feel slighted. You can help others understand by describing the cognitive changes that occur in MS and, perhaps, sharing some reading materials about it. Most importantly, you can let them know the strategies you are using to manage the problems so that they can help and support you.

Giving Clear Messages about When You Do and Don’t Need Assistance

Whether you are a person with MS or a support partner, there are times when you’re doing fine on your own and times when you need some help and support. Most of your close family members want to be helpful and supportive, but they can’t read your minds and they can’t judge for themselves when you do or don’t need help from them. So it’s important to be clear in your communications. When you’re doing well and feeling good, it’s fine to say, “Things are great today so I want to do as much as I can on my own; I’ll let you know when I need some help.” And on days, when you’re feeling overwhelmed, exhausted, or limited by MS symptoms, it’s OK to let people know you could use some help. When asking for help, it’s always better to be specific in your requests – “Could you please drive me to my appointment?” “Could the kids come to your house for a playdate?” “Could you pick up a few things at the grocery when you go shopping?” People find it much easier to help when they know exactly what you need.

Finding Helpful Resources

  • Can Do MS (www.cando-ms.org) offers monthly and archived webinars about communication, family relationships, and a wide range of other topics.
  • The National MS Society (www.nationalMSsociety.org) offers services and resources for individuals and families living with MS
    • The MS Navigator® service (1-800-344-4867) is available to offer information, support, and referrals to anyone affected by MS.
    • Brochures are available (www.nationalMSsociety.org/brochures) on a wide variety of topics (mood cognition, fatigue, other MS symptoms, support partner challenges), including materials specifically geared to young children and teens.