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Multiple Sclerosis: Tips to Encourage Open Communication

Whether you have multiple sclerosis (MS) or not, communication is a complex process, so don’t expect to be a pro right off the bat — most people aren’t. To get started, here are some tips for communicating with your adult family members.

  • Acknowledge your different communication styles. The starting point for good communication is recognizing that each of you may approach it differently. For example, you strong, silent types may need to think about approaching things more openly — at least as far as MS is concerned.

    And you chatty types may need to remember that not everyone else is as fired up to talk about everything in such great detail as you are. Your goal should be to find a middle ground, beginning with the recognition that you can’t begin deal with MS together without talking about it.

  • Make the time to talk. Given how busy everyday life is, it’s easy to keep putting MS conversations on the back burner, particularly when you’re a little uncomfortable about them in the first place. So, you may need to set aside some special time when you won’t be interrupted by kids or phone calls and when you have plenty of time to share everything that’s on your minds (sort of like sex!).

    You may even want to schedule regular times — a Sunday afternoon walk or a dinner out — to make sure that these conversations get the attention they need.

    A note about communicating long distance: For those of you who have parents or siblings that live far away, you need to think about what information to share and when. Families who are spread out tend to have different rules about sharing health information.

    Some families talk about absolutely everything (aches and pains, doctor visits, medical tests, diagnoses, treatments, and so on). Other families don’t share any information until there’s a treatment plan in place. Think about what the rules are in your family and whether they may need to be tweaked a tad.

    Keep in mind, however, that after your loved ones know about your MS, they’ll have reactions, questions, and concerns. And, the fact that your loved ones can’t see you readily will usually heighten their anxiety. So, be prepared to educate, answer questions, and give periodic updates. Parents, in particular, tend to hover. They are, after all, still parents.

  • Avoid competition. Because everyone in the family is affected when MS joins the family, family members sometimes have a tendency to get into a contest about who has it worse — the person with the diagnosis or those whose lives have been changed by a disease they don’t even have.

    This happens most when people don’t have a comfortable way to talk about their feelings and everyone feels unsupported. And when people start feeling unsupported they begin to say things like this:

    • “You have no idea how I feel. MS is changing my whole life, I feel lousy, and you just keep going on about your business as though nothing were wrong.”

    • “You have no idea how I feel. I’m doing all the work around here — on top of my full-time job. I don’t have any time for myself any more, and you’re always too tired to do anything fun.”

    • “Just ’cause Mom’s got MS, I’m stuck with more chores than any other kid I know.”

    Families do best when they can lay the blame on the MS rather than on each other. Doing so reduces unhelpful competition and labels the problem for what it is — a challenge that everyone in the family needs to meet. Some families have even given the MS a name — like Fred or Marietta — to help them remember that their shared goal is finding ways to live with it.

  • Get a jump-start if you need it. Sometimes getting started is the most difficult part of communicating. Families that don’t have a lot of practice with this kind of communication may need to practice a bit to get the hang of it. Educational meetings and self-help groups can be good places to practice.

    For those of you who like to get your practice more privately, family therapists can be a great resource to help you start the conversation. Call the National MS Society at (800) FIGHT-MS for the names of therapists in your community who have experience with chronic illness and disability issues. You primary doctor and neurologist are also good referral sources.

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