The Good, the Bad and the Ugly of Using Social Media After a Breast Cancer Diagnosis — and How to Make It Work for You

Connecting with others on online platforms can be an invaluable support system throughout a cancer journey. It can also complicate the healing process.

An estimated 4.9 billion people use social media around the world, making it a powerful tool for keeping in touch with loved ones, networking, and exploring personal interests. For those navigating a breast cancer journey, it can also be especially invaluable.

Social media offers access to support groups, keeps loved ones in the loop throughout treatment and provides a platform to share personal experiences. But social media can also be a place filled with criticism, negativity, and judgment, all of which can be stressful additions to an already intense breast cancer journey. 

PEOPLE spoke with several breast cancer thrivers to get their take on the positives and negatives of using social media while undergoing cancer. 

The Upside of Social Media After a Breast Cancer Diagnosis

A way to champion yourself and others

In 2017, Broadway performer Mandy Gonzalez launched a social movement called #FearlessSquad, which quickly grew into a global online community that provided support for all sorts of individuals, including those undergoing journeys with cancer.

“It was meant to remind people that they aren’t alone, but little did I know how much I would personally rely on it,” she says. 

In 2019, Gonzalez was in the midst of starring in Hamilton when she was diagnosed with breast cancer. She immediately turned to her social media #FearlessSquad for support.

“That gave me the strength to keep going-both in my health battle and in performing as Angelica Schuyler in Hamilton eight shows a week on Broadway,” she says. “I discovered that sharing my vulnerability with the squad wasn’t a weakness; it became a source of strength for me.”

Undergoing treatment can feel isolating for breast cancer patients – and for Gonzalez, this was heightened since her appointments took place during the Covid-19 pandemic.

She credits her online community as being her lifeline during this time and notes that they helped each other during some tough times, her battle included: “They were there for everything – classes, nutrition tips, laughter, tears, and unwavering support. We navigated that difficult time together, and it made all the difference,” she says.

An outlet to express yourself

After her 2021 breast cancer diagnosis, LaDawn Jefferson found herself posting about the process of being a patient with cancer. And to find some levity in a dark time, she turned to comedy.

“I shared my story with humorous skits from TikTok. I just basically showed what I was going through at that particular moment,” she says. “I had used humor to get me through the tough times dealing with cancer.”

“Nearly every aspect of being open about my journey on social media has been positive for me,” adds Alexandra Whitaker Cheadle, a four-year triple positive breast cancer survivor.

Though more and more young people are being diagnosed with breast cancer, she notes that younger patients are still in the minority. Therefore, many resources and information she was finding were not applicable for the younger life stage or the concerns her demographic is facing.

“[The resources were] really more for women like my grandmother!” she says. “I had so many questions and problems finding help when it came to topics like post-treatment fertility, entering chemical menopause at 24 and more — and many of my questions were best answered by my peer resources I found via social media.”

Motivation to keep going through the hard parts

Prior to her diagnosis, Jefferson had been active on social media, talking about races that she had been planning to run. People in her community knew what she was going through and often verbally encouraged her to keep going. But it was seeing others’ social media posts about kicking butt on the trail that inspired her the most.

“Little did they know by them posting their runs, personal best records and pictures of traveling to run other races out of N.Y. state, they gave me the strength to stay active and not let my illness get the best of me,” says Jefferson. She’s now gearing up to run the TCS New York City Marathon with the nonprofit, New York Road Runners. 

When she was in the trenches of treatment, unable to eat unless it was through a feeding tube, Stage 4 metastatic breast cancer survivor Tammy Morrow, a 55-year-old mother of two in Phoenix, found inspiration in following food-oriented social media accounts and bookmarking certain recipes.

“Some people thought I was torturing myself,” she recalls. “My husband asked me: ‘Why are you looking at food, especially food you want to eat, when you can’t eat anything at all?’ My answer was that these videos of healthy and delicious food made with fresh vegetables made me happy. They gave me hope. I told myself: ‘Tammy, when you get well, you should make this meal. It looks delicious!’”

A place to fundraise for expensive treatments

“Social media played an essential role in my breast cancer journey,” says Morrow, a 55-year-old mother of two in Phoenix. Because her cancer was so advanced when she discovered it, she sought care at an integrated cancer clinic in Scottsdale, Arizona called Envita Medical Center.

“Many of the cutting-edge chemotherapy treatments I received, which ultimately saved my life, are not covered under insurance,” she says.

Morrow posted about her situation on social media and was able to use it to crowdsource funds to help pay for her treatment. “I was able to raise much-needed support from family, friends, and gracious strangers through GoFundMe, Facebook, and Instagram,” she says. “This financial support was essential to my journey.”

A way to update friends and family on your journey

From the time they alert friends and family of their diagnosis, cancer patients can be continually inundated by requests for updates. Not only can it be exhausting to try to keep up with the incoming questions, it also may not be something the patient wishes to discuss at that moment. Social media can provide a great way to keep people posted without having to exert the energy involved to personally reply to each inquiry.

“It offered an easy way for me to communicate important information about my cancer journey to my family and friends,” says Morrow, of posting about her journey on her personal pages. 

A means of finding others in similar situations to confide in

Through social media, Jefferson was able to connect with breast cancer support groups and found a group for individuals with leptomeningeal disease, which she battled alongside breast cancer.

“I was able to connect with people who had experienced things that I was about to experience,” she shares. “I no longer felt alone and to my surprise I didn’t know it’s so many women out there battling cancer.” Jefferson also was able to hear reviews about her neurologist and feel confident that the doctor was the right choice for her personal battle with her condition.

“I was diagnosed at 24 years old, with no family history, genetic mutations or peers to turn to for the age-appropriate advice and community I so desperately craved,” says Whitaker Cheadle. Being so young, she found that the resources and support groups that her hospital provided her with did not satisfactorily fulfill her needs.

“By turning to social media, I was not only able to share my story and raise awareness for other young people, but also connect with warriors worldwide who were facing the same,” she reveals. She’s formed valuable friendships through the social media breast cancer community and connected with a helpful support group, The Breasties, through Instagram. She encourages those going through a diagnosis to be open to connect with others and try to avoid feeling self-conscious about reaching out to someone new.

“You never know when you’ll meet a new friend! Just send the DM, make the post. If it’s coming from the heart, it will usually lead to a positive benefit,” she says.

Social media can also be valuable in supporting loved ones of those diagnosed with cancer. “Although I did not use social media as a resource to connect with support groups, my husband found consolation through his social media relationships, especially Facebook,” says Morrow. This, she says, was a necessary comfort to him when he felt helpless in the face of her illness. 

Connecting with helpful information:

“When I didn’t know something about my diagnosis, treatments, medication and diet I looked online for the answers,” says Jefferson. Through her search on social media, whether it was breast cancer forums or pages for clinical institutions, she was able to track down helpful information on what to expect. “I found answers, saw videos of the type of surgery I was going to have, I listened to seminars about my secondary cancer leptomeningeal disease that was found in my spine,” she says. 

The Downsides

Social media can be inherently ngeative

Humans have a negativity bias and often, the things they share on social media can be heavy, whether it’s a story of an animal being abused or a sad news story, there is plenty circulating on these platforms that can bum you out. Throw in some arguments over politics and suddenly the platform you’re turning to for inspiration can be dragging you down.

Even in support communities, there can be a lot of sad stories being shared, says Morrow: “Fighting cancer is not just a physical battle. It is also a mental battle.”

She encourages those with a breast cancer diagnosis to try to seek out more uplifting content instead. “Fill your mind and soul with encouraging music and inspiring stories. Read stories of survival and hope,” she says. 

Unsolicited – and sometimes unsupportive – opinions

Though most people have good intentions, the anonymity of social media may lead to some typing a comment on a survivor’s post or to send them an unsolicited DM that is far more hurtful than helpful.

“I would say one of the cons is weighing others’ comments and opinions,” adds Gonzalez, specifically “when others send you things that they feel ‘prevent cancer’ as though it’s your fault. You’re already filled with so many emotions, self-blame is the last thing you need. Navigating that can be really tricky at first, but you quickly realize what kind of support you need.” 

Whitaker Cheadle shared her anger at hearing, “Well, at least you got a free boob job!” when she discusses her double mastectomy.

“A mastectomy,” she stresses, “is nothing like a breast augmentation. It’s quite literally an amputation of your chest and visual and aesthetic results vary from patient to patient. Even for those with the best aesthetic outcomes, it’s an extremely emotional and life-altering procedure, not to mention invasive.” 

An overwhelming amount of information and opinions

At times, Jefferson found social media to be overwhelming when it came to trying to make the right decisions for herself.

“There’s one debate about using medication vs going the holistic way to help with fighting cancer,” she says. “Many times, someone would lay it into you to choose what you feel is best for you.”  

She advises people in a similar situation to take their time and research to help make the journey easier, using all the free resources available to them, but to also be mindful of when they might be approaching information overload.

“When that happens, step back and take time for yourself,” she says. “Get to a place to be at one with yourself. Work on your mental health. Read something positive or go out and enjoy time with your family and friends.”

Watching difficult journeys for those in your community

While seeing people kick the disease and go on to thrive can be motivating, there’s also the extremely emotional other side of the coin, when those you have become close to don’t survive the disease.

“My biggest negative experience being on social media while having cancer is watching other members die in front of you,” Jefferson reveals. “Over time you see their weight loss, their face changes, skin drying up, it gets harder for them to talk, and you see they no longer have the ability to walk.”

To see someone post one day and be gone the next was difficult for her to process, she says: “I begin to think about me, about my own death.”

It can feel unfair to watch life continue as normal for others

Despite wanting the best for their loved ones, patients admit it can be hard to see others enjoying normalcy while they’re in the middle of their treatment.

Whitaker Cheadle says observing the social media activities of her friends could bring her down.

“While I have an incredible group of supportive friends who were with me every step of the way, it was really sad, frustrating and difficult to log on to social media on days I was barely able to get out of bed and see them still living their mid-20s life!” she admits.

Being diagnosed with cancer changed her day-to-day, she says, and really put her life on pause in comparison to her other friends. “While I was happy to see them thrive and live their best lives, seeing things like job promotions, exciting travel and even their growing families had a twinge of sadness for me as well as I was in such a different life stage,” she says.

The key to finding the balance is to set boundaries

Even though her experience was largely positive, Whitaker Cheadle says what really helped her focus on the positives of social media was to set boundaries with the platforms.

“I’ve found it’s not healthy for me (and probably for most people!) to be engaging in cancer-related content 24/7,” she says. She encourages others to not be afraid to make burner Instagram accounts where you just follow cute puppies or delicious food accounts for mindless, mood-boosting scrolls.

And feel free to unfollow a social media support group that is no longer serving you in the ways that you need, she says.

“There are so many groups and communities available – don’t be afraid to leave a group that is no longer right for you,” says Whitaker Cheadle. “Cancer is a mental battle just as much as it is a physical battle and it’s extremely important to protect your peace above all.”

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