Online support groups: Getting connected

If you have chronic pain or a chronic illness, there are times when you might feel alone, depressed, or misunderstood. Maybe you’ve been accused of being overly dramatic, or “faking it” when you don’t feel well. This can be so upsetting! You know that you’re in pain and/or sick, but no one else seems to get it – including (possibly) your own family, spouse, or health care provider.

Where can you turn for support, if the people who know you best have let you down?

Life in the fast lane

Before the Internet, only face-to-face support groups were available for people with health issues. But if you had a rare disease or specific needs, it wasn’t always possible to find a group in your area: You traveled to the group, or you did without.

Internet and broadband access has sped up the whole process, though. According to the Pew Peer-to-peer Healthcare report of 2011, approximately 23% of internet users living with a chronic condition report going online to find how others cope and manage.  As of 2012, there were at least 138,000 different online patient and caregiver groups in Yahoo’s “Health and Wellness” category alone.

But Yahoo is only one place to find online support groups that are run by patients, for patients. Other locations include, for example, MSN and Google. And if you’d rather join an online group that’s more “official,” with group leaders, company backing, and (sometimes) medical experts, you can turn to sites like WEGOhealth, PatientsLikeMe, and dailystrength.org.

What’s the point of a group?

Any group that you join may turn into the family you always wish you had: kind, supportive, and helpful, with only occasional crankiness thrown in. The best feature of any support group, though, is the overall understanding of your situation. After all, these men and women walk in your shoes every day, with many of your same problems and frustrations. For example, they may have:

  • Symptoms that are similar to (or exactly the same as) yours
  • Friends or family who don’t believe them
  • Treatments and medications that may or may not be working
  • Information about good doctors and hospitals

The bottom line? Nothing feels better than finally hearing someone say, That happens to me, too, and I know just what you’re going through. A good support group will help you feel understood and valued.

What should you look for?

When you first join an online support group, it can be tempting to jump right in and start posting messages. Don’t. It’s best to sit back for a few days first and see how the group works: (next five items bulleted)

  • Are new people welcomed?
  • Is there a group leader or moderator who keeps the discussion going, or provides guidance?
  • What happens if there’s a disagreement between some of the group members? Do people stay civil?
  • Are group members careful not to give medical advice, or push for members to buy certain products?
  • Are there only one or two members who post all the time, with everyone else “lurking” in the background?

There are some other issues to watch out for, too:

  • Some medical information that people post may be inaccurate, wrong, or even dangerous. Speak with your health care provider before trying any new treatments or products that you read about online.
  • People are usually more active in online groups when they feel at their worst and are looking for support. Don’t take it for granted that you’ll face the exact same health challenges and problems that are described by other people. Everyone is different.
  • Don’t become so addicted to online groups that you withdraw from your family and friends. Online relationships should never take the place of face-to-face contact.

Pay attention to your instincts. If something doesn’t feel “right” about any group that you’ve joined, leave and find a different one.

Should you start your own group?

If you have a rare disease that doesn’t have many online support groups available, you might want to start your own. You’ll have a chance to make a big difference in the lives of other people…but don’t take this responsibility lightly. It takes work and a real time commitment to create a group and keep it running. There are websites that can give you detailed instructions; some links are at the end of this article.

If you have a health issue that’s pretty common, though (like “chronic pain”), it might not make sense to add a new support group to the growing stack. For example, there are already over 12,000 “chronic pain” support groups available in Yahoo’s “Health and Wellness” section. Try searching for a group that suits your needs; you can sort the groups by the number of members or how long each group has been around.

Whether you join a group or start your own, remember: Your support needs led you to this point in your life. Treat your fellow group members with the same kindness and respect that you’ve always wished for yourself.

Resources

About.com or visit About.com chronic pain area
http://pain.about.com/

American Chronic Pain Association
http://www.theacpa.org/Support-Groups

American Self-Help Group Clearinghouse
http://www.mentalhelp.net (search on “self-help group sourcebook”)

Mayo Clinic
http://www.mayoclinic.com (search on “support groups”)

WebMD
http://www.webmd.com (search on “support groups”)