Using Social Media to Navigate a Diagnosis of Cancer

Social-Media-IconsBy Robyn Stroller, founder of Cancerhawk.com. originally published on CancerHawk.com in February 2013.

No ifs, ands or buts about it… cancer sucks!  A diagnosis of cancer is life altering.  And for many, it is devastating – emotionally, physically, financially and socially.  Navigating a treatment plan and finding, much less making sense of, the information & existing resources that help cancer patients and caregivers is as challenging and confusing as the disease itself.  So what’s a person to do?

The more educated patients are about their disease, the better decisions they can make about their options.  Scouring the Internet for information on a specific type of cancer is relatively simple, although searchers must be cautious to visit reliable, trustworthy medical sites.*  In 2009-2010, I did tons of searching and researching while we were battling my husband’s cancer.  For me, the more I read, the more I learned, the smarter my Google searches became, and the more resources, information and treatment options I found.

My Paradigm Shift:

Today, I still search daily for information and resources that help patients and caregivers navigate their way through a diagnosis of cancer.  However, I rarely research using just Google anymore; instead much of my research is prompted by my interactions on Twitter and Facebook and from reading other people’s blogs.  It’s ironic that I say this because I’m the person who used to think that social media was a waste of time.  I had never even heard of a blog before 2010 and I thought Facebook and Twitter were simply another way for people to over-share their life using status updates.

I now see firsthand how social media enables patients, caregivers or anyone touched by cancer to make sense of their diagnosis by connecting them to the people, perspectives and resources they need when they need them.   Social media not only empowers people to share their stories and make friends (and to over-share life’s moments at times), but it is also a gateway to information they may not find from their doctor or via Google.  It’s how I find many of the things I write about on cancerhawk.com.

Facebook: The Great Connector

Facebook is most people’s go-to social media sharing site with over 1.06 billion active monthly users.  It’s the social media app that spans the largest age demographics- heck, both my 13 year old daughter and my 74 year old mother now have Facebooks.  As a result, Facebook is probably the easiest way to connect with a large group of family and friends; to keep them informed of what’s going on; to receive support and encouragement; and to gather information.

In his article “Using Facebook in the War On Cancer”Gabe Canales (aka @GabeCanales), prostate cancer survivor & founder of Blue Cure Foundation, writes that the instant connections made of Facebook can provide support, education and hope.  He says, “Such instant connections are a way to know immediately about new treatments and clinical trials and to share experiences about drugs, doctors, hospitals, treatments and other elements of the cancer journey.”  Knowledge is power… and Facebook makes it easy for knowledge to be shared.

Blogging Communities:  An Opportunity to Learn from Others

Blogs can be more than just personal diaries. They are websites that provide readers an opportunity to learn, ask questions and make comments regarding the author’s articles or posts.  Blogging communities and social networking sites such as Treatment Diaries; What Next; ColonTown, My BC Team, IHadCancer, Inspire also connect those touched by cancer with others facing a similar diagnosis.  Real life experiences, practical tips, lessons learned & treatment insights are easily shared in these forums.  Reading blogs also offers those who are shy or are embarrassed by their questions and concerns to learn without having to put their name or face out there.  Blogs are where I find some of the most in-depth, consistent coverage of what it’s like to live with and how to survive a diagnosis of cancer.

Twitter:   Where Questions Get Asked & Answered in Minutes

A little tweet goes a long way.  Twitter is where questions are asked and answered quickly in 140 characters or less.  In addition to learning about new treatments and clinical trials, Twitter also enables patients and caregivers to connect with others outside their immediate circle for support and information.  It’s where Stef Woods (aka @citygirlblogs), breast cancer survivor and advocate extraordinaire, went to connect with other young adult cancer survivors who understood what she was going through during her cancer treatments and beyond.  The tremendous support she received from her twitter followers helped her get through each day.

Twitter is where I go to connect with thousands of cancer patients, survivors, caregivers and patient advocates on a daily basis.  It’s where I met Stef and Gabe.  It’s where I find many of the different resources and information that I write about on cancerhawk.com.  I learn about things that I would never have been able to find via Google in part because Twitter makes it easy to search for keywords or terms using hashtags (#).  My search results often lead to instant patient and resource connections.  BTW, next time you’re on Twitter, check out tweets using my favorite hashtag #cancersucks ;-).

The Bottom Line:  Social media enables people- regardless of who they are,  where they live and whether you knew them previously or not- to connect with one another in incredible ways.  Knowledge and experience get shared; encouragement and support are offered; questions get answered; strangers become friends; treatment options and types of assistance are uncovered; hope can be found.  So if you’re feeling up to it, check out Twitter or Facebook or someone’s blog and see what new connections you make.  I’d love to hear about it if you do so please email me at robyn@cancerhawk.com.  xoxoxxox

* For more information on finding credible information on the Internet, visit ThinkBright.org and eHow.com.