Support Groups on (and off) the Internet

Support on the Internet

The net has made possible a revolution in support for cancer (and everything else). Internet support groups can be incredibly potent sources of both emotional support and information. Finding a good online support group may turn out to be the most important thing you do for yourself in your battle with cancer.

Although I have put this article in the Mind and Attitude Section, it could just as well be in my Researching Your Options section. I co-manage an e-mail discussion on kidney cancer, and despite years of experience with kidney cancer, my e-mail list is very often where I get my earliest information on new developments as well as insights I wouldn’t have thought of myself.

Face To Face Support

In addition to the advantages of real contact with real people, face to face support groups offer the possibility of getting inside information about the best local doctors, hospitals, and alternative practitioners and even local sources of practical help. Local support groups may also feature speakers and activities.

Finding a group for your specific kind of cancer is possible for a few of the more common cancers particularly, breast and prostate cancers, but is otherwise more difficult than on-line, and many face-to-face groups aren't specific to any one cancer. Some national patient groups for specific cancers may have chapters especially in major cities.

Most hospitals run support groups, and you may want to check more than one, even if they aren't at your hospital. Your city may also be home to specialized support organizations often called Wellness Communities.

Online support groups have some unique advantages:

  • The MegaBrain Concept: Unlike face to face support groups, online support groups can have hundreds or even thousands of members. The ability to tap into so many minds at once is a huge advantage, because when you have that many people, someone has been just where you are or knows the answer to your particular question, or has a unique idea for you. Truly, 1000 heads are better than one!
  • Support for Your Specific Situation: With a few exceptions, it’s hard to find a face to face support group for your specific type of cancer, or situation, but there are specific online support groups for nearly every kind of cancer.
  • Specific Support for Rare Cancers: Even for rare and unusual cancers there may be active support groups with hundreds of members. With a rare cancer, the collective wisdom of such a group is truly unprecedented, and rare cancer groups can have enormous positive influence on research and treatment for their disease.
  • They are Available 24/7/365: You can post a message to one of these groups anytime the Internet is up and running, and that’s anytime. Often you’ll get responses in minutes to hours.
  • You Don’t Have to Travel to Participate:, a great advantage if you live in a remote area far from face to face support groups, or if you find it hard to get out.

 

They also have a few special disadvantages:

  • SPAM, SPAM, SPAM and SPAM (Baked beans are off). When anyone can post without restrictions, marketeers selling the latest cancer cure, or even porn are sure to be found. Internet support forums vary tremendously in how well SPAM is controlled. Some do an excellent job, while others have no way to control spammers.
  • Online forums can be plagued with “Flame Wars”, discussions which create lots of heat but no light. Again, some forums are well managed and keep this to a minimum. Some are dominated by a few crackpots with an axe to grind.
  • You never know who’ll read what you write. In most online support groups the majority of members never post. This is called lurking. This is actually as likely to be a blessing as it is to a problem, you never know if someone who knows something important will respond to your message seemingly out of the blue. It happens. Also, unlike real support groups it’s much harder to be sure that people are who they say they are even if they do post.
  • High Volume: Many forums are so active that it can be very hard to keep up with all of postings. Viewing discussions by topic, if the forum allows, or filtering email into a special folder can help.

Types of On-Line Support Groups

There are several different kinds of online support groups, and the different technologies greatly influence the character of groups. Many members of my kidney cancer E-Mail list call it a “site” or a “board” but actually it’s neither. It helps to be able to distinguish between the different kinds of forums available on the net.

E-Mail Lists

Bulletin Boards

Newsgroups

Chat Groups

Evaluating Online Support Groups

Many online support groups have archives where you can look through old postings, and some like bulletin board systems inherently show old postings. It’s worth looking through the archives or alternatively, monitoring the group for a little to get an idea of what it’s like. Also if there are group rules and policies, perhaps on a web page, have a look at them too. Some basic questions to consider:

  • Is the group active? Look at how many messages were posted in the last few days if there is an archive, and look at how many members the group has if that information is available.
  • Are people’s concerns answered?
  • Is the discussion on topic and of interest to you?
  • Is there much SPAM or many flame-wars?
  • Is the group moderated (Moderation means postings are reviewed before being posted)? Moderation can be very effective in reducing SPAM and flame-wars, but obviously it can also be a tool of censorship.
  • Who are group leaders and does their style work for you?
  • Are group members free to express their mind or are some topics off-limits? If there are limits are they reasonable? I believe successful support groups are freedom powered – things go best when the greatest possible latitude for expression is allowed, but some limits are usually needed to keep the group friendly and on-topic.
  • Are medical professionals active in the group? Most online groups have little participation from experts in the area, though often doctors or especially nurses who are also patients will chime in from time to time. Occasionally an online group includes an active world-class expert.

Posting and Usage Hints

These general hints will help you get the most out of Internet forums of all kinds.

  • Don’t be Afraid to Post! The majority of members of most of these groups never post (called lurking). If the forum looks good and you have concerns or questions you think the group could help with, you will get the most benefit if you post.
  • Help Out! Internet support groups are about mutual aid. If you have something to share either information or support please do. Helping others will also help you! Many groups have a few very knowledgeable people who answer lots of questions, but no one knows everything.
  • Be Specific: You can’t get the right answers if you don’t ask the right questions! Whether you’re seeking emotional support or information, be as specific as you can about your situation, your questions and your concerns.
  • Use Appropriate Subject Lines in Your Posting. “New member, first post” or “Help!” are not very specific. Instead, try things like, “Need help coping with scan anxiety”, or “New curamycin phase II clinical trial”. If you are replying to an earlier posting and the subject of the discussion has drifted, change the subject line to match.
  • Look at the List Rules and get a feel for the culture.
  • Check the Archive: If you are seeing specific information and the group has an archive you may find the answers by searching in the archive. Browsing the archive is also a good way to get a feel for the group culture.
  • Cultivate a Thick Skin: Discussion on an Internet forum can be hotter than you’re used to and it’s best to be slow to take offense and to keep your eyes on the prize which is support, information, and a path to wellness. If you’re about to respond with anger, give it a few minutes and then think again. When you are missing the cues provided by body language misunderstandings can happen easily. When you can’t see the smile, you might miss the joke. Also, perhaps because of an increased feeling of anonymity online, people are often willing to say things in writing they wouldn’t dream of saying face-to- face. Finally, even the best people under a severe stress like cancer will make mistakes once in a while.
  • Take Information and Advice With a Grain of Salt. On a quality Internet forum, much of the advice is excellent and is sometimes even lifesaving. Still, most of the advice and information in these groups comes from other patients, not professionals, and misinformation is all too common. Before you stake your life on something you learn on an Internet group, check it out with your doctor and research it yourself (See the section on Researching Your Options for how). If you’ve been getting a background in how your cancer is treated, you’ll have a much better feel for what makes sense and what is off target (See my article Cancer Types and Staging and the Research Section to get started gathering information).
  • Security and Privacy: Don’t post your phone number, social security number etc to any public forum. Beyond that, don’t be overly paranoid. I recommend you use your real name, and e-mail address (possibly modified for anti-spam if you are using a newsgroup). If you are sending to an individual group member rather than the whole group and there is a reason to share phone numbers or addresses don’t hesitate if it seems appropriate. Many face-to-face friendships start online.
  • No Marketing! If you’ve found this page because you’re trying to find a place to sell something rather than because you need help with cancer, just go away. No one wants SPAM and sales pitches and you will be instantaneously terminated from the better forums if you try to sell anything, and hated everywhere, even if you aren’t terminated.

This CancerGuide Page By Steve Dunn. © Steve Dunn
Page Created: October 1, 2004, Last Updated: October 1, 2004
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