5 Things to Do When You Are Diagnosed with Multiple Sclerosis

A multiple sclerosis (MS) diagnosis can be overwhelming. Alternatively, it may come as a relief to finally get a definitive diagnosis. But however you handle the news, the early stages of the disease have a great amount of uncertainty, says Victoria M. Leavitt, PhD, Multiple Sclerosis Clinical Care and Research Center at Columbia University Medical Center in New York, NY. Your MS may progress slowly—or rapidly. It may go into remission, but for how long? Will you be a worst case? A best case?

While this uncertainty is unavoidable, there are still steps you can take to feel in control. Here’s what you need to do (besides listen to your doctor’s advice) in the coming days, weeks, and months.

1. Share the News

Decide who are you going to tell, and when. Are you only going to tell immediate family now? Will you tell your children? What about friends and extended family? What about your boss and coworkers? You'll also want to consider how (and how much) you want to reveal. Think carefully about what you will be sharing, advises Leavitt.

2. Join a Support Group

It’s the not knowing—the feeling of uncertainty and a complete lack of control—that causes the most stress. "That lack of control needs to be addressed immediately," says Leavitt. Visit the National MS Society’s website for information about local chapters. If there is not a group near you, ask your doctor for recommendations. Once you've found a group, "Reach out to group leaders ahead of time to make sure it’s a right fit," says Leavitt. "You want to join a group with others who were recently diagnosed and living the same experience and struggles as you."

3. Connect With Professionals

In addition to your family, close friends, and neurologist, your support network should also include other professionals such as a social worker, physical therapist, and psychologist or psychiatrist. Social workers can help navigate insurance and employment issues, such as if and when to share your diagnosis, and more. Physical therapists can help you manage physical challenges, and psychologists or psychiatrists allow you to unload your feelings and expectations on someone other than a family member.

"Culturally, we place a very high value on being self-sufficient, but at times we need to reach out to others for help," explains Leavitt. "For example, do you cut your own hair? While you could, there is someone that can help you—and do it a lot better! You’re facing a chronic disease with no cure. MS is a big change. If there’s someone out there that can help you, let them."

4. Consider a Financial Planner

A financial planner can help you manage money and plan for the future while dealing with a chronic illness. The MS Society offers free financial information through Financial Education Partners, a collaborative program with the Society of financial Service Professionals. Call 1-800-344-4867 to find out more.

5. Become a Lifelong Learner of MS

Being knowledgeable about MS will help you manage the unpredictable nature of this disease. As the disease changes course, take the time to learn about new symptoms, how they can affect your life, and how to manage them. "Every patient is unique and different," says Leavitt. Continuing to learn about MS will help you better manage your condition.

This article was reviewed by Victoria M. Leavitt, PhD.

Sources

Victoria M. Leavitt, PhD. Phone interview, January 22, 2106.

"Knowledge is Power." National MS Society. Accessed January 24, 2016.