Enhance Communication about MS by Learning More - dummies

Enhance Communication about MS by Learning More

By Rosalind Kalb, Barbara Giesser, Kathleen Costello

Clear communication about your multiple sclerosis (MS) is the best way to avoid confusion, resentment, and “I told you so” conversations down the line. To enhance your communication, you need to get better acquainted with MS. You don’t have to become the world’s expert on it, but you do need to know enough to make wise choices and sound decisions.

Many of these choices and decisions are going to affect the whole family, so being able to talk about them and share opinions openly is important.

Because people tend to like their information in different formats, here’s a menu to consider:

  • Doctor visits: Partners may want to consider going together to the neurologist. Hearing the same information at the same time and having the opportunity to ask questions together can help to reduce confusion and get the communication started.

  • Reading materials: Printed stuff is great because you can take it with you and indulge at your convenience. Books that are appropriate for all ages are available at just about any bookstore or library. Also, the National MS Society has brochures on virtually every aspect of MS. Check them out online or request them by calling 800-344-4867.

  • National MS Society website: The Society’s website is jam-packed with info about the diagnosis and management of MS, progress in MS research, and helpful resources.

  • Online programs: These types of programs are attractive because you can access them 24-7 and you don’t have to be sociable about it. The National MS Society offers programs on a wide variety of topics. Many of the manufacturers of the MS medications offer programs as well.

  • Live programs: In-person programs are just the ticket for people who like the personal touch. You can ask your questions firsthand, meet others with MS and exchange war stories and tips, and get to know a whole new group of people.

    Even though you may be reluctant to meet folks whose MS is worse or better or different than yours, remember this: Many people find that getting to know others who are living and dealing with different types of symptoms is helpful and reassuring.

  • Self-help groups: If you’re one of those people who feels more comfortable, less anxious, and less alone when getting information in a group setting, self-help groups may be perfect for you. Call the National MS Society (800-FIGHT-MS) or the Multiple Sclerosis Association of America (800-532-7667) for information about local self-help groups.

    For those who like the group feeling but don’t enjoy or can’t get to a group meeting, chat rooms and bulletin boards also offer this kind of supportive environment. Check out the National MS Society’s online community options.

    Keep in mind, however, that the information you get will vary with its source — not everything you hear at a support group or online chat will be relevant to you or accurate. So be sure to check with your doctor or the National MS Society to verify any information that feels iffy to you.

When accessing any information, pay attention to the source so you can be on the lookout for subtle — or not so subtle — biases in the information. Whereas the National MS Society and other MS advocacy groups are committed to providing unbiased information, the pharmaceutical companies are always wearing two hats when they develop consumer information: They’re providing education about MS while trying to sell you their product.