Explaining Your MS to Others (or Not) - dummies

By Rosalind Kalb, Barbara Giesser, Kathleen Costello

You probably thought that dealing with your own feelings about being diagnosed with multiple sclerosis (MS) was hard enough. Well, guess what? You have to deal with everyone else’s feelings as well.

This task wouldn’t be so difficult if all the people in your life reacted in the same way, or if you could predict what the various responses might be. But, the reality is that each person’s response reflects his or her personality, communication style, emotional reactions to the news, and — most importantly — knowledge about MS.

So, you need to be prepared to educate, explain, comfort, and reassure (or whatever else is called for). The bottom line, however, is that people will take their cues from you: The way you see your MS and present it to the world is the way they’ll tend to see it too.

The first step in preparing yourself to deal with the reactions of others is to put on your teaching hat. If you want others to understand you and your MS, you’re the one who’s going to have to educate them.

A person’s knowledge of MS can range from nothing at all (“What’s that? Oh, it’s that telethon disease, right?”) to know-it-all (“You really need to go to Timbuktu for that cure I read about last week on the Internet — it’s a miracle!” or “Oh, I know what that is. My aunt has had it for 50 years and you could never tell it to look at her!” or “My friend’s mother has that and she’s in a nursing home.”).

So, you need to be ready to tell people what MS is and isn’t, and how it’s affecting you and your life. Like any other teacher, you need to start by mastering your subject. Educating yourself — with this book and the other helpful resources we mention — prepares you to answer questions and correct misinformation.

The National Multiple Sclerosis Society, as you may already know, is one valuable resource. Brochures describing virtually every aspect of life with multiple sclerosis are available from the Society’s website or by calling 800-344-4867. What Everyone Should Know About Multiple Sclerosis (suitable for the whole family), What Is Multiple Sclerosis?, and Living with MS are great brochures to give to anyone who has a lot of questions or gives you that “deer-in-headlights” look.

One of the most important pieces of information to share with others is that MS is a variable and unpredictable disease that affects each person differently. So, after you’ve given them the basic information about MS, the next task is to tell them about your MS. Here are some tips:

  • Clarify for people that you’re not one of “Jerry’s Kids.” The Jerry Lewis Telethon is for muscular dystrophy, which is a neuromuscular disease that primarily affects children. Instead, remind them that multiple sclerosis is thought to be an autoimmune disease that affects the central nervous system, primarily in adults.

  • Explain that MS affects different people in different ways. Tell them that although some people with MS become severely disabled, most don’t. Emphasize that your MS is your own and that nobody else’s will be exactly the same.

  • Reassure those who burst into tears. People may burst into tears just when you’re feeling a bit in need of comfort yourself. Reassure them that several effective medications are available to treat MS and that you’re doing all the recommended things to take care of yourself. You can also tell them that it’s okay to spend the next five minutes feeling sad together, but then you’d much prefer to talk about the other stuff that’s going on in your life and theirs.

  • Depending on how much information you’re looking to share, you can describe the ways that MS affects you. This is a good opportunity to explain how variable symptoms can be from morning to evening or from one day to the next. You also want to give people a feel for some of those symptoms they can’t readily see, such as severe fatigue, numbness or tingling, pain, or problems with attention or memory.

    If they’re interested in finding out more about any of the symptoms you have, or other symptoms that a person with MS might have, you can offer them a booklet from the National MS Society (for example, Fatigue: What You Should Know, Gait or Walking Problems: The Basic Facts, or Vision Problems: The Basic Facts).

  • Dodge fad “cures” and “miracle” drugs. In response to well-meaning advice about what medications to take, cures to try, or foods to eat or not eat, the best strategy is usually to explain that you and your neurologist are working together to choose the best management strategies for your particular disease course and symptoms.