For cancer survivor, Facebook groups offer safe space to share challenges, offer support | Patient Perspective

Facebook and other social media outlets get a lot of criticism for promoting a perfect, air-brushed view of life, and especially of women’s bodies.

But my Facebook community is a very different kind of place. As a survivor of a rare colon cancer, I follow people who inspire me.

I read posts from women going through traumatic medical issues. Horrible, painful, ER-worthy skin conditions beneath their stoma appliances that would cause the average person to faint. Many are young mothers trying to acclimate to their new bodies after surgery to treat colon cancer, advanced Crohn’s disease or other bowel conditions — lifestyle changes they never expected, much less with toddlers in tow.

These women are warriors. They are entering territory that very few have encountered. I pray we remain a small tribe, because our journey is not for the weak or faint of heart.

I was never a fan of social media. I found it disturbing the way people just blabbed about themselves, or their children, politics, bad drivers, or their fabulous night out. So much egotism! Until I met some real, honest folks.

Sure, some of my Facebook friends still are focused on planning their exercise regimen, reading about the latest lifestyle trend, or monitoring their caloric intake. Respect to those who can plan their running schedule while getting a healthy dinner plated. I remember when I was that person. OK, not the running part.

Getting a life-altering diagnosis abruptly changed my rather calm routine. It also changed my approach to exercise and nutrition. I learned to view exercise as a bonus and food as a treat. I learned to adapt and be happy no matter the mountain in my path.

And then I found people like me. In time, I encountered people starting their journey needing a boost — a boost I could offer with almost a decade of experience to share! Reading my Ladies Ileostomy Group or F.A.P. posts are where I find the real, true grit — laugh-out-loud humor in the face of disaster; deep sadness knowing the future is going to be a constant challenge; uncontrollable tears knowing there are no alternatives but to face life with a dramatically altered body.

Loneliness, even for people married or in a relationship, is a real thing for those of us facing this experience. So are lost friendships, because cancer, hospitalizations, exhaustion and depression aren’t fun, especially when they go on for years. Not every relationship can withstand that pressure.

These communities are where we can share trials nobody else wants to hear about. After a recent surgery, a woman described lying in bed, praying for sleep, yet her pouch kept leaking, inflaming raw, oozing skin with all the signs of infection. Her mother and fiancé slept on, oblivious to her misery. But her tribe could offer advice and sympathy for her nightmare. Another woman described trying to cope with two pouches — one for an ileostomy, the other for fistula drainage — along with healing an incision in her abdomen.

A young mother, with three children under age 6 and a brand-new ileostomy, shared her gratitude at no longer being chained to the restroom due to Crohn’s disease. In our community, she also could share her struggles with trying to figure out her new body and trying to feel attractive both to her spouse and even to herself. So many stories.

And then I see it: the confidence, the absolute beauty, the women who have decided to thrive rather than just survive. I see young women posting pictures in their cute shorts, jeans or bathing suits, asking the group whether they should go out in public, showing their scars. Yes! Women scared and looking for support, trying to regain a smidgen of confidence after illness has stolen it all. These women own their bodies — scars, ostomies, and all. The amount of support that reaches across the world is incredible.

Life is messy and complicated when you’re living with chronic pain and body image changes, but I am so happy to have stumbled upon these groups filled with hope and laughter. Especially now, they are beacons inspiring us all to go out and find our light.

Denise Teter lives in Kimberton, Chester County, with her family. She can be contacted at deniseteter5@gmail.com.