Socially speaking: online cancer networks
Support and information, just a click away
I admit it, I have been one to shy away from support groups, in person or online. I have attended support groups where people warned me about how terrible treatment was going to be, which only frightened and depressed me. I’ve visited online forums where it was more of the same. I started this blog and wrote From Incurable to Incredible, in part, to create my own type of support group where people focused on hope and shared information on how to lead healthier, happier lives.
But I think I was “throwing the baby out with the bathwater,” as they say. There are a lot of great online groups that provide both hope and information, along with a large helping of support to fellow members. There are so many groups out there, it can be overwhelming. Here are a few I recommend (Just click on the names to go to the sites):
- Talk About Health: Their tagline is “You’re Not Alone,” and they mean it. I met its founder Murray Jones and his mom at the Annie Appleseed conference and was so impressed by their warmth and genuine desire to connect with and help survivors. The site includes patients, caregivers and experts who share on topics from breast reconstruction to yoga and herbs. They even have interactive workshops where you can ask experts questions. I’m looking forward to the one on Aug. 16 with Bernie Siegel, MD. I’m a member, and I recommend you join!
- Inspire: I joined a while back, and I have to admit I haven’t participated often. But I logged in yesterday and found a great discussion thread on their metastatic breast cancer group. The question: “How long has it been since you were diagnosed?” I was amazed by the number of women who responded and the number of years some have been thriving since their mets first appeared. I immediately friend-ed several women, asking them to share their stories on this blog. The site has an abundant number of groups for different cancers, and vast numbers of other topics, including autism, asthma, pregnancy and aging issues.
- Facing Cancer Together: This is another comprehensive site with information on treatments, trials, caregiving, and healthy lifestyles. What really caught my attention was their digital quilt. It’s similar to the AIDS quilt, which featured patches dedicated to patients, except this is online. Each patch represents a survivor or someone who has passed away from cancer, and each tells a story. You can create a patch for you or someone you love. Check it out!
- I Had Cancer: A new site focused on connecting people based on experiences with cancer so that they can easily communicate with one another and share information. I was impressed by the simple design and their Dear Cancer feature, which allows you to write a letter to cancer. It’s interesting to see how others address their cancer. Neat idea.
In addition to support, visiting online networks are a way to gather information to make more informed medical and wellness decisions. It is a step toward becoming a more empowered patient. I invite you to visit these sites and would love to hear back what you think! Connect with you later!
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