Your MS is Part of You But Not All of You - dummies

Your MS is Part of You But Not All of You

By Rosalind Kalb, Barbara Giesser, Kathleen Costello

If you become so preoccupied with your multiple sclerosis (MS) that it’s all you think or talk about, other people will follow your lead. They may happily talk about nothing but MS for a while, but eventually most will get bored with the subject and start to distance themselves from you.

Even though MS is probably the biggest thing on your mind, it’s important to remember that the people close to you still want to connect with the you they knew before. You — as well as the people in your life — may sometimes need a reminder that you’re still you in spite of your MS. Just like before you were diagnosed, your ideas, interests, opinions, and sense of humor are still important to them.

On the other hand, if you avoid the subject and people still insist on treating you like a sick person — talking only about your health, your symptoms, or your medications — it’s time to help them shift the focus. You can remind them that your life is full of things besides MS. Here are some strategies to try:

  • Introduce other subjects to let them know that you like to think and talk about other things.

  • Ask about them — their life, loves, kids, work, and health — to show how important they are to you.

  • Make a date for an outing or activity to let them know that you’re still up for fun and excitement.

  • If they don’t take the hint, tell them that you like to get on with your life and keep your MS on the back burner whenever possible.

  • If you get really desperate, tell them that talking about MS all the time is really boring.

  • Go the extra mile to help people get to know you and see what’s behind your mobility equipment.

In today’s high-style, high-speed, youth/health-oriented culture, many people aren’t all that comfortable with illness or disability. When meeting you for the first time, some people may assume that because you have difficulty walking, for example, you can’t hear, think, or talk either. Or they may assume that you won’t have much to offer them.

Even though your patience may be stretched to the limit, this is an opportunity to educate people and help them feel more comfortable. Give them a chance to get to know you and pretty soon they’ll see you and begin to forget about the mobility aid.

As an example, consider the following situation: Sarah and John were out for dinner to celebrate their anniversary. They picked a handicapped accessible restaurant so that John wouldn’t have any difficulty maneuvering around the tables in his motorized scooter.

When the server approached the table to take their order, she turned to Sarah and said, “What would he like for dinner?” Sarah smiled at the server and said, “He’ll be happy to let you know what he wants.” John, recognizing that the world has a lot to learn about MS, and disability in general, simply said, “Thanks — I’ll have the steak, medium-rare, please.”