The Power of Patient Blogs: A Window Into the Lived Experience

“Patient blogs reveal the true extent of the impact of cancer on finances, work practices, family life…they offer a window into the lived experience of the patient.”

~Marie Ennis-O’Connor

When you are 34 years old, lecturing and working in Public Relations and Marketing at a University, you aren’t thinking about cancer.  Yet in 2004, Marie Ennis-O’Connor suddenly had to.  Her life changed with her diagnosis of breast cancer.

In a recent post on the International Journal of Public Health website, this Irishwoman writes, “A cancer diagnosis is not just a single event with a defined beginning and end, but rather a diagnosis [which] initiates a survival trajectory characterized by on-going uncertainty, potentially delayed or late effects of the disease or treatment, and concurrent psychosocial issues that extend over the remainder of a person’s life.”

The uncertainty, delayed effect of the disease or treatment and the possibility of recurrence are all part of the limbo that cancer patients experience after treatment.  “People think your story ends the day you walk out of hospital after your last treatment, but in many ways it is just beginning.”  This aspect of survivorship is not understood by people who have not had cancer, e.g., family, friends and especially health care providers.

And this is Ms. Ennis-O’Connor’s passion–to change  the  care that cancer survivors receive. “There is sometimes a code of silence about what happens after cancer treatment ends.   I wanted to break the silence and provide a safe space for cancer survivors to share their experiences after cancer.   There are good things, but there are also times of grief, loss and confusion – I want those stories to be heard.”

Ms. Ennis-O’Connor suggests that healthcare providers need to change the way they  care for cancer survivors.  She believes that the blogosphere is a place for providers to begin to understand survivorship. “Patient blogs have huge potential to inform healthcare practice.  Patients’ own narratives shed light on cancer’s social impact on the individual, family and society, often in a manner that illustrates in profound and evocative terms… a window into the lived experience of the patient.”  By reading these blogs, health care providers can attain an appreciation of life with cancer from diagnosis through survivorship.   “Perhaps they [healthcare providers] will discover gaps between what they assume patients think or feel and what we actually do think and feel.  [Blogs] can be a valuable tool to close the communication gap that can exist between patient and doctors and healthcare practitioners. “

Ms. Ennis-O’Connor started her award winning blog in 2009.  Now  Journeying Beyond Breast Cancer has over 600,000 views and over 4000 followers.  “Writing my blog has been the single most empowering thing that I have done in my journey with cancer,” she says.  But the blog has been much more , it has brought people together.  As fellow blogger, Anne Marie Ciccarella states, “[Marie] introduced my blog [Chemobrain, In the Fog with AM from BC] to many bloggers…[The] Breast cancer community was facilitated by ‘Journeying Beyond Breast Cancer.’ Every Friday [Marie] wrote a “Round Up” and SHE brought an entire community together.”  Ms. Ennis-O’Connor has written this weekly review of blog posts in the breast cancer blogosphere since late November 2010.

“[Blogging] has enriched my experience, brought new friendships into my life and expanded my horizons like nothing else,” Ms. Ennis-O’Connor states.  Indeed, she is a board member of Europa Donna Ireland –  The Irish Breast Cancer Campaign , an advocacy group that is one of 46 EUROPA DONNA member countries across Europe. She has become the social media manager of the newly formed Dublin chapter of the Global Health 2.0 movement and she has just started the first breast cancer social media chat on Twitter in Europe #BCCEU. 

According to Ms. Ennis-O’Connor the benefits of blogging are numerous.   “Blogging increases social support, self esteem and empowerment.  Blogs offer an online place for expression of emotion, [and] information exchange…Blogs bring about a sense of community. Blogs make you feel like you’re not alone, that someone else understands what you are going through.”

During cancer treatment, there is a plan and significant support from family and friends.  But “when my cancer treatment ended [the] full impact of what had happened hit me –[I] needed more support,” Ms. Ennis-O’Connor states.   Yet there was little information on the chat forums and websites about the “limbo” in which she found herself.   Integrating the experience of having cancer and surviving it is something for which patients are not adequately prepared.   Now, at least, there are blogs that describe the experience, led by Journeying Beyond Breast Cancer.  But there needs to be more and Ms. Ennis-O’Connor is an activist working toward that end.

“Cancer can be frightening and lonely,” Ms. Ennis-O’Connor states. “Being able to write about it honestly and connect with others is a powerful release.”  Ms. Ennis-O’Connor turns to a favorite quote by Rebecca Fall to describe the importance of patient blogs.” ‘One of the most valuable things we can do to heal one another is to listen to each other’s stories, ’”she quotes.  “Patient blogs represent the complex and widely diverse range of cancer experiences. Sometimes just the very act of having our story heard and acknowledged can go a long way towards healing.”   

*Based on #hchlitss twitter chat and email communications.