Living in the Age of Information: The Impact of Media And Social Media On Your Cancer Journey

Living in the Age of Information: The Impact of Media And Social Media On Your Cancer Journey

Speaker: Sharsheret’s Director of Navigation Services Shera Dubitsky, MEd, MA

There was a time before the age of computers when women received cautious and filtered information about their health status from their doctors. At that time, doctors were the only ones attending conferences.  Today, women still get much of their information from doctors and their treatment teams, but now many conferences are geared to patients, and information from the medical and patient-centered conferences is accessible on the computer. Medical research and studies are available on the Internet. There is much television coverage, many newspaper articles, and cancer organizations presenting information almost every day. Social media is shining light on individual stories and experiences and enables a sharing of information between patients.

Is there too much information? Is “too much” better than “not enough”?

The advantages of media coverage are many, including:

  • Bringing cancer awareness to light, sometimes resulting in more money for research and treatment, particularly when celebrities share their stories.
  • Enabling women to have more control over how much information they seek.
  • Empowering women to advocate for themselves as a member of the treatment team, rather than simply being seen as a patient.
  • Evaluating and increasing medical options.
  • Sharing research and scientific knowledge between research scientists, physicians, and patients, thereby advancing the detection and treatment of cancer.

Some disadvantages of media coverage include:

  • Media hype is not always based on accurate or complete information.
  • Statistics are quoted but are not always accurately or responsibly explained.
  • Certain treatment or alternative options that are presented have not been thoroughly researched.  Sometimes, one study gets reprinted in multiple news outlets and is seen as truth.
  • Accurate and inaccurate information and statistics quoted in the media can raise anxiety. Reading or hearing a featured story can trigger emotions.

Social media like Facebook and online forums have allowed people to communicate with one another, to share experiences, and to give individuals a sense that they are not alone. A Brigham Young University study found that more than 60% of Internet users in 2013 used social media to find health information, though I would imagine that this percentage is higher once an individual is diagnosed with an illness.

The downside of social media is that people are sharing information that is relevant to their circumstances and may be unrelated to your situation. They are sharing information, as it is understood by them and not necessarily factually based or accurately delivered. It can be difficult hearing about other people’s experiences, the victories as well as the heart-wrenching stories. It can trigger anxiety, fear, depression, or, in some instances, false hope. Also, social media moves much faster than research and this can feel deflating to individuals who are desperately seeking advances in treatment.

Here are some healthy ways of managing information that you are getting from the media and social media:

  • Don’t assume that the information is completely accurate. Bring the information to your treatment team and say, “I found this online. What do you think? Is this relevant to me?”
  • Stay informed by turning to reliable and responsible media sites. Ask your treatment team where you can find the most recent and reliable information.
  • Cancer diagnoses and treatment today is very individualized. It is tempting to relate other people’s stories and experiences to your own. Try to keep in mind the variables of your situation.
  • Remind family members, spouses, partners, and children that much of the information out there may not be relevant to you.
  • Communicate with your support network clearly as to whether or not you want them to forward information.
  • Ask family members, friends, or even Sharsheret staff to post on online forums and have them filter information that is relevant to you.
  • Remember that Sharsheret is here for you to discuss your thoughts, feelings, or triggers that may have arisen from a news source or social media.

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