Multiple Sclerosis: Communicating with Adult Family Members - dummies

Multiple Sclerosis: Communicating with Adult Family Members

By Rosalind Kalb, Barbara Giesser, Kathleen Costello

Now that you’ve been diagnosed with multiple sclerosis (MS), family life may feel a little different — and you and your family may find talking to each other about it difficult. So, just at the point when you need to communicate with one another about what’s going on and what you’re going to do about it, you may find talking about it difficult.

It’s common for people to have trouble talking to each other about stressful or frightening things. Here are some reasons why a family living with MS may find it difficult to discuss what’s going on:

  • No two people have exactly the same coping style. One person clams up while another person talks. Or maybe one person wants to forget about the problem for as long as possible while the other wants to become an expert on the subject. Given that MS keeps changing over time, it’s not too surprising that people’s coping styles are likely to conflict on a routine basis.

    The tendency, of course, is for everyone to think his or her own coping strategies are the best. The fact is, however, that family members need to recognize and respect these individual differences before they can communicate comfortably. And everyone needs to be careful not to misinterpret the differences.

    For example, the fact that your partner doesn’t want to read books about MS or go to support groups doesn’t mean he or she doesn’t care or isn’t as sad or anxious as you are.

  • People have a lot of misconceptions about MS. Each person’s ideas about the disease are based on someone with MS that they have met or read about. Because everyone’s MS is different, the result is a hodgepodge of information.

  • Family members often worry about upsetting or burdening each other. In other words, family members feel so protective of one another that none of the tough stuff ever gets talked about.

    For example, a partner may be thinking “She’s so worried about her MS right now. I can’t possibly tell her how moody she has been or about my concerns over our finances.” And the person with MS may be thinking to herself “My husband has already taken on so many extra chores around here, I can’t possibly tell him I don’t think I should be driving right now.”

  • Some subjects are just uncomfortable. Sex, bladder and bowel, and cognitive problems immediately come to mind. Under the very best of circumstances, many couples have trouble talking about sex. So, if MS begins to interfere with sexual activities, talking about it may be too difficult — particularly if the couple didn’t talk about sex when it was great!

    The same can be true for bladder and bowel symptoms. Not too many people feel comfortable talking about bladder accidents or bowel problems — adults just aren’t supposed to have to worry about those things. The common theme here, of course, is embarrassment. These are touchy issues that people may find difficult to discuss.

  • The subject of money can generate a lot of heat in any family — with or without a chronic disease to complicate things. More couples argue about their finances than just about anything else. Given how costly MS can be, it isn’t too surprising that couples sometimes disagree on how the family’s resources should be divvied up.

Open and honest communication is essential — it’s the foundation for providing support to one another and problem-solving successfully.