Learning to live with cancer is bringing many surprises. One is that online support groups often provide more help and support than my medical team.
For the past four weeks I’ve had severe joint pain that disrupted my ability to work, sleep and perform most daily activities. I’ve seen three different physicians, including my oncologist, and have gotten multiple responses but little relief. The responses have included ineffective medications, advice to take over the counter products that are incompatible with my cancer treatment and prescriptions that the insurance company has refused to approve. As this has dragged on, the pain has gotten worse and the problems resulting from the pain have also been exacerbated.
Today I finally got some answers, through a daily email I get from an online support group for patients who share my illness, Chronic Myelogenous Leukemia (CML). A co-survivor sent in a question asking about the joint pain – a side effect of the drug therapy for CML – and the responses included specific solutions and perspective on the situation. Most importantly, they provided information that none of the doctors gave – real world reassurance that this is a temporary side effect and will go away. Now I can take steps on my own to resolve the problem and move forward.
Experiences like mine are one of the reasons more patients are turning to the Internet for health information. A June 2009 study found that 61 percent of US adults use the Web for health information, with many looking for user-generated content written by others with similar medical conditions.
From the report:
In 2000, 46% of American adults had access to the internet, 5% of U.S. households had broadband connections, and 25% of American adults looked online for health information. Now, 74% of American adults go online, 57% of American households have broadband connections, and 61% of adults look online for health information.
The study called us “e-patients” and said that while people continue to turn to traditional health information sources they are also “deepening their engagement with the online world."
Here's one of the questions asked for the Pew Internet and American Life Project:
"Thinking about all the sources you turn to when you need information or assistance in dealing with health or medical issues, please tell me if you use any of the following sources..."
• 86% of all adults ask a health professional, such as a doctor.
• 68% of all adults ask a friend or family member.
• 57% of all adults use the internet.
• 54% use books or other printed reference material.
• 33% contact their insurance provider.
• 5% use another source not mentioned in the list.
I have no doubt that the numbers are going to go higher as more people discover the value of online support groups and health sites like EmpowHER. As in the physical world, you need to evaluate these health information resources carefully and it can take a while to find the ones that meet your needs. Finding a great one, though, can make a real difference in your ability to manage your health condition…and sometimes even give your doctors information that they don’t know.
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