Multiple Sclerosis: Reaching Out for Emotional Support - dummies

Multiple Sclerosis: Reaching Out for Emotional Support

By Rosalind Kalb, Barbara Giesser, Kathleen Costello

In addition to the support you get from family and friends when you’re diagnosed with multiple sclerosis (MS), you can look to other sources of support as well. Other people living with MS can be helpful because they “get it.” They have had similar feelings, faced similar challenges, and made similar kinds of decisions. Tapping into the MS community — whether in face-to-face groups or through social media — can help you feel more empowered.

Consider these options:

  • Self-help groups: Also called support groups, they sometimes get a bad rap (one group may be all doom and gloom, another has someone who monopolizes the conversations, and another hangs its hat on miracle cures). The fact is that some are wonderful and some aren’t. But, when you find the right one for you, it can be the perfect place to share experiences, brainstorm solutions, get acquainted with helpful tools and workarounds, learn from others’ successes, and get helpful feedback.

    Every support group is different: Some are professionally led and others are peer-led; some are more social and others have a more lecture and discussion format; some meet every week and others meet monthly; and some have a fixed membership targeting a particular group (for example, people with MS, partners, the newly diagnosed, those people with more advanced disability), and others are open to anyone who wants to attend. It may take some trial and error to find a group that’s right for you, but it’s truly worth the effort. You can call the National MS Society at (800) FIGHT-MS or the Multiple Sclerosis Association of America at (800) 532-7667 for information about groups in your area.

  • Social media: This option includes forms of electronic communication, such as websites for social networking and microblogging, which allow people to join online conversations for sharing information, ideas, personal messages, and other content such as videos. Unlike traditional websites where visitors go to use information that was created for them by someone else, social media sites offer users the opportunity to create their own information. In other words, these sites are active, living environments for connection and communication.

    The good news is that social networking opportunities are growing by leaps and bounds. People with MS have more ways than ever before to interact with one another. Social media can be especially valuable for those who are uncomfortable with in-person gatherings, who are limited by mobility or fatigue issues, or who live in a rural area where in-person options are limited. Visit the National MS Society’s website to find a current list of places to connect online.

    The same sharing that can feel so comforting and empowering can also threaten your privacy. The information you share and the interactions you have online are public and visible to all (and likely searchable on a search engine), whether or not the person looking at them is your Facebook friend, another connection of yours, or a total stranger. We urge you to protect yourself.

    Never share your street address, Social Security number, birth date, or other personal information that could be used to impersonate you. And keep in mind that disclosing your MS online may also be disclosing it to a potential employer. In other words, don’t say anything online that you wouldn’t paint on the side of your house or that you wouldn’t want to see on the front page of your morning newspaper!

    On social networking sites people share a lot of information about MS — some facts and a lot of opinions. Anyone can present his or her views as “fact” or “truth” so it’s up to you to check stuff out for yourself. If something sounds too good or too wacky to be true, it probably is. So run your questions by the experts — your healthcare team, the National MS Society (800-344-4867) — or look up the facts.