Whether sharing your cancer diagnosis on Facebook, posting a picture of your new chemo beanie on Instagram, or seeking advice in an online support group, social media is playing an increasingly prominent role in how we communicate about cancer. Is this a good trend? Is it problematic? We look at how and why people are using social media to talk about cancer.
The benefits of sharing your cancer story
For some people, sharing their disease on social media platforms is a welcome outlet and valuable opportunity. They may be choosing to educate others about their disease, share the emotional trials they are enduring, offer suggestions for others experiencing the same thing or looking for compassion and comforting words.
Educate and inspire
Many people choose to share their story online because they want to educate others about their disease and treatment or offer support to those embarking on their own cancer journey. Those were some of the reasons Sierra Nevada Cancer Center patients gave us for why they wanted to share their stories on our blog and social media.
Some cancer patients have established social platforms and therefore a built-in audience. After his cancer diagnosis at 19, Peyton Dickinson used his popular YouTube fitness channel to build understanding of testicular cancer. “I wanted to be an example and give people insight to what happens if they have the same cancer as me or are undergoing the same chemotherapy as I was.”
Keep those you know informed
Social media can be an easy, practical way to keep those who are close to you updated on your disease and treatment. Individual phone calls take time and energy that someone undergoing treatment may not have.
Laurie O. turned to Facebook and her own blog - Notes From My Mother - to share her breast cancer diagnosis. “I don't keep secrets from those I care about, and it was the easiest way to inform people outside my inner circle. I knew I would find support, encouragement and prayers, which was helpful and appreciated. As I learned more about the risks factors for breast cancer, and about current research, I wanted to share information that might help someone else.”
Finding and giving support
After being diagnosed with stage 4 metastatic breast cancer, Stephanie Seban turned to Facebook and Instagram to connect with other women on the same journey. It was a way for her to feel less isolated. “Having community can be very healing,” she says. “I have met some incredible people on social media who I can now call friends.”
Cheyann Shaw changed the focus of her social media channels to document her journey because she wanted to be a voice. “The sense of ‘community’ helped me in my journey with cancer because I never felt alone. I knew that there was always someone out there who I could turn to who had a similar experience as I did and they were able to give me advice.”
Rachel Hill writes on The Mighty website, “I’ve used social media to let people know that I can’t cope. It’s been a cry for support and an easier way to say to people, ‘Hey! I’m really struggling!’, rather than picking up the phone and telling them.”
Lynne M. wrote on the SNCC Facebook page, “When I was diagnosed, I searched and searched for someone like me who had a stoma from removal of bladder/urethra just because I wanted to know what to expect. When people [like me] get diagnosed, they want to talk to like-minded people who can give them reassurance that life will go on after cancer.”
Sharing the personal in public isn’t for everyone
For many people with cancer, talking about their disease on social media is not an option due to privacy concerns and the desire for control. Users leave a digital footprint wherever they go online, so what they share online is there – forever.
Keep private things private
By definition, social media platforms are ‘social’ – they engage a large group of people. So, when an individual chooses to talk about their cancer diagnosis or treatment on a social platform, they are “going public” with that information. It is important for individuals to understand that they are making that information public, even if it feel like they are talking to a close group of friends.
While the privacy of your medical information is protected under HIPAA, the act only binds organizations like health care providers and their business associates, not social media sites like Facebook. It's important to always review updated terms and conditions to stay informed on how your information is being used.
On the Sierra Nevada Cancer Facebook page, Linda H. wrote, “I have told very few people that I have Leukemia…It’s personal and not everyone needs to know. I don’t tell everyone because I don’t want to be treated differently.”
You don’t always get what you want, or need, online
There is no vetting process on social media. Cancer posts and discussion groups can be scary, negative or even misleading. How others react to your posts can be disheartening and even traumatizing.
Such was the case for Jessica DeCristofaro who went online after being diagnosed with stage 4B Hodgkin’s lymphoma. She was looking for answers and support from those who had been through it. But the Facebook groups she found were very negative, and it was difficult for her to read posts about poor outcomes and from people who did not believe in treatment.
According to Jennifer Wolkin, a psychologist at the Joan H. Tisch Center for Women's Health at NYU Langone Medical Center, people have a tendency to overshare on social media. She recommends, before posting, ask, "What am I seeking?" If satisfaction is based on how many likes a post gets, social media can backfire as a support system. If patients have low self-esteem, they can fall into the habit of using social media to "seek immediate acceptance and attention, rather than to connect and/or show care for others,” she adds.
Rebecca Matos, a breast cancer survivor and blogger, warns that not everyone on Facebook will understand or know how to react to posts about a diagnosis. Be prepared for a range of responses. "People feel sorry for me [or] don't agree with me,” Rebecca says. “You have to be open to criticism, just like you have to be open to criticism in life in general.”
Closed groups offer another option
A closed social group, one that has parameters for members to join and post, is another option for cancer patients, survivors and even caregivers looking for online support. These groups are already a self-selected group of those with similar challenges and concerns, so camaraderie and empathy are more inherent. Depending on the group’s rules, the posted content may be restricted to viewing by only those in the group. These groups can provide an outlet and resource for those with cancer without compromising their privacy in the professional setting or in their social circles.
However, do exercise caution with any group. Do not give out personal information through any website unless you know for certain how they will use that information and why they need it. We recommend starting with groups offered through nonprofit cancer organizations like these: