Alone. Isolated. Overwhelmed. These are feelings that anyone who’s received a cancer diagnosis is likely to experience. These feelings are also triggers for wanting real, personal connections with others who understand what they’re going through.
We already know from the State of Cancer Report that an overwhelming majority — 89 percent — turn to the internet after being diagnosed with cancer. And because the average person will spend more than five years of their life on social media, it’s fair to assume these individuals are largely turning to Facebook, Twitter, Instagram, Snapchat, and YouTube for advice, support, and encouragement.
Social media can be a double-edged sword, and many find that logging in can be more harmful than helpful after a traumatic event.
Of course, having a social life isn’t limited to just social media. Going to a cancer patient discussion group, trying a new yoga class in your community, or even grabbing coffee with a friend who truly cares are all ways to be social and to find hope and inspiration no matter what you’re going through. Ultimately, it’s about making connections — no matter if they’re online or in person.
For the following four individuals, a cancer diagnosis meant turning toward their social media channels rather than away from them. Read their inspiring stories below.
Finding support on social media was inevitable for Stephanie Seban when she was diagnosed over six years ago.
“Google and the internet in general proved to be really frightening,” she said. “Being that I was diagnosed with stage 4 metastatic breast cancer, any search would pull up negative and unpromising stories and facts pertaining to my survival chances.”
Facebook and Instagram were two places that she could go to connect with other women who were going through the same journey that she was. It was a way for her to feel less isolated.
“Having community can be very healing. I have met some incredible people who I can now call friends on social media,” she said.
But there was a drawback to Seban’s social searches: She found it difficult to find support for younger women with stage 4 cancer. “Not many people talk about stage 4 metastatic disease, let alone post about it,” she said.
This was her main reason for starting her own website. Her mission became to learn everything she possibly could about both the prevention and treatment of cancer, and to provide helpful resources to young adults dealing with metastatic diseases.
“My circumstances and diagnosis are both very unique. This has fueled me to make it my life purpose to raise awareness for us MBC patients and to let people know that breast cancer isn’t a ‘one size fits all’ disease. It has taken some time for me to get my story out there because I don’t look ‘sick,’” she said.
Dickinson had his first cancer surgery on his 19th birthday. Not something that any teenager would wish for, but it was something that Dickinson had to face almost immediately having received a positive cancer diagnosis just three days before.
Instead of turning inward and being private about his diagnosis, he turned to his already popular YouTube channel to post videos about his journey.
“I wanted everyone that followed me to know why there wouldn’t be any fitness and health themed videos on a fitness and health themed channel,” he said. “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.”
Being open about his testicular cancer was a brave move. After all, only 1 out of every 263 males will develop this type of cancer during their lifetime. And only 7 percent of those diagnosed are children or teenagers.
Dickinson found social media to be helpful to generate more awareness about the disease, and to keep his family — particularly his grandparents — updated. What he didn’t expect was the number of strangers who poured out their hearts in show of support for him.
“One person would send me motivational quotes almost every day while I was dealing with the cancer for 6 months,” Dickinson said.
On top of this, his favorite YouTuber and fitness influencer drove more than two and a half hours to meet Dickinson on the morning of his chemotherapy.
For Cheyann Shaw, it took just 24 hours after her ovarian cancer diagnosis for her to check social media for help.
“I already had a smaller fitness following on social media, but I knew I had a battle and journey that needed to be documented,” she said.
She filmed a video log of herself documenting her cancer diagnosis and posted it to her YouTube channel. Since that first video over a year ago, Shaw has continued to post updates on her chemotherapy treatment as well as other motivational videos such as tips on staying positive, how to deal with struggles, and fitness techniques.
“The reason I turned to social media and changed my social media channels to channels documenting my journey is because I wanted to be a voice,” she said.
In addition to YouTube, Shaw used Instagram and Facebook to connect to others who were also battling with cancer. She didn’t always have the best luck on these channels, however.
“I turned to Instagram mostly to reach out to those who were battling cancer and see if they had any tips or advice, but when I went to Instagram, I wasn’t able to find people who wanted to talk about their battle and struggles,” she said.
Still, she didn’t let this take her down. She realized that the community she had built was enough to keep her going.
“Keeping yourself mentally strong is just as important as your body physically fighting cancer,” she said. “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 that I could turn to who had similar experience as I did and were able to give me advice.”
It took over two years before Jessica DeCrisofaro was officially diagnosed with stage 4B Hodgkin’s lymphoma. Multiple physicians had misdiagnosed her symptoms, and even brushed off what she was experiencing as just allergies or acid reflux. When she received her diagnosis, she went online for answers.
“At the beginning of my diagnosis, I immediately turned to Google for answers as to how my life was going to be and how I could possibly deal with what at the time seemed like such a horrific tragedy that I was dealt,” she said. “It didn’t seem fair, and I found that there was no real guide book to cancer.”
She found plenty of Facebook groups, but most of them were very negative, and it was difficult for her to read posts about not making it or not believing in treatment. This was the start of what would become her new journey: Helping and inspiring other cancer patients through her blog and Instagram account.
“I’m a very big fan of Instagram, because you can look up the hash tag of your specific cancer, and find ‘cancer friends,’” she said. “I surprisingly have met some of my closest friends on Instagram. We all went through diagnosis and treatment basically together.”
She realized through all this that the cancer community really gets it, so she decided to write her own book, “Talk Cancer to Me,” for others going through what she was experiencing.
“As much as your family and friends want to help you, they don’t understand what it’s like unless they are in your shoes,” she said. “The cancer community has experienced it all, the pain, the nausea, the hair loss, looking in the mirror and not being able to recognize yourself, the anxiety, the depression, the PTSD… everything.”