Talking About Your MS: Responding to Unsolicited Advice - dummies

Talking About Your MS: Responding to Unsolicited Advice

By Rosalind Kalb, Barbara Giesser, Kathleen Costello

Whether you want it or not, you’re likely to get a lot of advice from people about multiple sclerosis (MS) and how to take care of yourself and manage your life. Many patients report that they’re always being sent little newspaper clippings and website URLs filled with information about the latest “MS cure” or health fad.

Family members, friends, and colleagues may weigh in on everything from treatment decisions (take something — don’t take something) and employment decisions (quit — don’t quit), to family-planning decisions (have children — don’t have children), and dietary decisions (eat this — don’t eat that).

When you’re first diagnosed and still trying to figure out what’s what, the advice may feel great. But then you discover that what one person says is the complete opposite of what someone else says. Even when you talk to other people with MS, you get contradictory information and suggestions.

Most people who give advice are doing so because they care about you. The upside of this is that they’re reaching out to provide help and support. The downside is that some people get really cranky when you don’t do what they suggest.

The best strategy with the cranky folks is just to say “thank you” and let them know that you (and your partner) will be thinking carefully about all these decisions with the help of your healthcare team.