Online Support Networks for Chronic Disease

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Online support groups for the chronically ill and their caretakers can be a lifeline for reducing isolation and enabling us to connect to resources that we might never find on our own.

This month, our regular Tuesday health resource posts will introduce readers to useful tools or online resources.  

Online support groups for the chronically ill and their caretakers can be a lifeline for reducing isolation, enabling us to connect with a community that really understands what we're going through (especially when symptoms or finances make travel difficult) and enabling us to connect to resources that we might never find on our own. Some of the most frequently visited sites -- Health Central, Patients Like Me, Healing Well -- serve as hubs.  From there, users can access discussions on any of a broad spectrum of  chronic diseases.  Others are disease-specific, such as Diabetes Daily and the arthritis support site on About.com.  Many users of these sites like the breadth of information they find; the availability of other voices who share their experience, day or night; and the non-judgmental attitudes of their online friends.

However, not all online support groups are created equal.  Here are things to look out for as you search for one that suits your needs:

  • Many people use message boards to describe their most extreme reactions or feelings - positive and negative. If you're feeling overwhelmed by what you're reading, back away and take stock of how the information is affecting you. Are you getting too much information? 
  • As pastors, much of your job is providing comfort to others, so beware of landing in yet another group that needs something from you. While the best groups provide a healthy balance of give and take, it can be easy to tilt too far in one direction, negating any healing effects. If you're spending lots of your online time cheering others up, are you getting what you need from the group?
  • Beware commercial sites or sales websites that masquerade as support sites. One diabetes support site I visited for this post led quickly to a link for expensive supplements.
  • Your support community may identify a lot of alternatives to the care you're currently receiving.  No online group can replace your physician's care. Check in with your doctor before initiating a new course of therapy. If your doctor strenuously disagrees with something new you're proposing, either get her to explain why, to your satisfaction, or find a different physician who is more open to your active search for alternatives.

There are a lot of other similar online communities out there that blend support and disease-specific resources. Let us know if you find something particularly good.

Yours in health,
Robin

Robin Swift, MPH
Health Programs Director
Clergy Health Initiative

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