Social media brings hope to chronically ill

Faith Merino · February 28, 2011 · Short URL:

Pew study finds that disease sufferers go online to connect with others with the same health issues

Anyone who says they've never googled a weird symptom or rash to see if they could self-diagnose a debilitating disease is lying. Everyone's done it, everyone has come up with bizarre and totally unqualified diagnoses for themselves or others, get over it. 

But for people who have been diagnosed with a disease--especially a rare disease, the Internet is playing an interesting new role as a community builder. In honor of Rare Disease Day (February 28), the Pew Research Center released a new study Monday morning to examine social media and health. The findings: a full 18% of Internet users surveyed said they have gone online to connect with others who have experienced similar health issues. For Internet users suffering with chronic conditions, that figure balloons to 23%, compared to 15% of users who don't live with chronic illness.

One particular part of the study stands out. Of the 3,001 people surveyed, all were asked if they had one of the following five conditions: high blood pressure, lung conditions, heart conditions, cancer, or diabetes. Of those who reported having one of those health issues, all were equally likely to have gone online to look for others with the same condition. But for those who had a rarer condition that was not listed, a much greater proportion said they've gone online to connect with others with the same condition: 32%, compared to 15% of Internet users with no chronic conditions. 

The study's author, Susannah Fox, notes that the Internet provides a powerful resource for patients suffering from rare conditions to connect with others and share feelings and information that they may not be comfortable sharing with friends and relatives. One woman living with a blood disorder noted in the survey: “We can saythings to each other we can't say to others. We joke about doctors and death. We cry when we need to.Together we are better informed. The support is powerful and empowering.”

The same holds true for caregivers: 26% of Internet users surveyed in the report who are caring for a loved one with a chronic condition said that they've gone online to connect with others suffering from the same condition. 

However, while the Internet acts as a rich source of information and social connectivity for people living with disease, they're still likely to turn to doctors for hard facts. When they're looking for an accurate diagnosis, 91% of respondents said they go to a doctor, while 5% said they look to fellow patients, friends and family. Additionally, 85% look to a doctor to get information about prescription medicines. Interestingly, even when they want more information about alternative treatments, two-thirds of those surveyed said they would ask a doctor. However, when it comes to getting practical advice on managing day-to-day health issues, respondents were equally split between going to a doctor and going to friends and fellow patients. 

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