Sharing your story as a breast cancer survivor on social media requires authenticity, creativity, vulnerability with keen knowledge of navigating the responsibility of telling stories that benefit the reader. I have learned a lot from my guest on episode 18, breast cancer, and the patient voice in social media with Marie Ennis O’Connor.
She guides many breast cancer writers as a social media consultant, keynote speaker, and digital storyteller. Her creative work can be found at Journeying Beyond Breast Cancer. Marie’s work spans the globe, and her impact creating a cross continental family of writers is immeasurable. I am excited to share the summary of the DiepCJourney podcast for her presentation, The Weekly Roundup, on Twitter.
How Marie Began to Use her Patient Voice
Marie was diagnosed with breast cancer in her early thirties. The two myths she faced and shares with us are:
- She only knew breast cancer to be an older woman’s disease, those of post-menopausal women.
- Having no family history, Marie thought she would not be diagnosed with breast cancer.
The feeling was isolating and quite shocking for her at the time as a young woman in Ireland. She knew no one else her age who had breast cancer. Her biggest concern was her future chances of bearing children. At the time, her physician never spoke to her about fertility and preserving her eggs for a future pregnancy. Marie believes this was the start of her patient advocacy.
She partnered with a nonprofit in Ireland and oncologists who worked to write and develop a resource to inform young women what they could do for fertility preservation during treatment. It is still in circulation today with additions and new resources added over the years.
Marie, being an Irish writer, draws on inspirational quotes. One of her favorites that speaks to her advocacy and those of others is this. She changes the pronoun at the end of read “her”.
Whoever among us has learned through personal experience what pain and anxiety really are must help to ensure that those out there who are in physical need obtain the same help that once come to her.
Albert Schweitzer
The Patient Voice in Social Media
Twitter was not even around when Marie was diagnosed. Its popularity began in 2007 and became a game changer for Marie. She realized the powerful source of information and access to support over time in communities like BCSM (breast cancer social media). Connecting with leaders in the social media world like Dr. Deanna Attai became essential avenues to learning and sharing evidence-based information in her own breast cancer community on social media.
Although the learning opportunities are endless Marie also points out it is easy to become jaded by the negativity that sometimes befalls the Twitter and social media world. Her best advice when navigating social media:
- Don’t fall into the trap of becoming an echo chamber and only engaging with your own community.
- When you step outside your community, just listen, even if you do not always agree.
- However, form those tight communities to establish trusted sources who you can run things by.
- Find a mentor who can guide you in a positive learning community.
Honoring the Patient Voice in Social Media
One of the strongest pieces of advice from Marie to industry, please don’t treat our patient stories like commodity. They are a precious part of ourselves and Marie has spoken about this at conferences she attends with industry leaders. She shares this quote from one of our favorite contributors to the Weekly Roundup, Abigail Johnston:
We are still human beings outside of our trauma and suffering and those of us who know this experience and how important it is to live, we can connect differently, we connect deeply, and we connect in a way that is meaningful.
Abigail Johnston
If you’ve been asked to share your story as a patient advocate, ask where it will land and be visible. Marie points out your story should be the real part of your advocacy. If you want to change hearts and minds share your story but be mindful of how you do it. I couldn’t agree more with Marie when she says the onus for responsibility should be on industry to protect and honor the patient voice, not on the patient willing to share their story.
The Value of the Patient Voice in Shared Decision-Making
Marie knows I learned about the concept of shared decision-making from my own reconstructive plastic surgeon, Dr. Minas Chrysopoulo. Through social media we have broadened our scope and purpose in making this a term we want others to know about and use at consults in any healthcare. Her powerful article echoes the vision we all share, for this to become the norm in decisions made between two experts, the patient, and the healthcare professional to honor the patient’s preferences in their care.
We wrap up our fun and informative chat by adding to our bucket list in hopes of meeting soon in Ireland for a “cuppa”. Marie hopes it happens for a meet up, tweet up, and to share it everywhere on social media. I wish her well in my closing remark, “Sláinte” the Irish toast meaning, “to your good health”.
Enjoy Episode 18: Breast Cancer, the Patient Choice in Social Media in it’s entirety here.