By Alexis Puthussery
The presence of social media in modern life can’t be denied. Be it TikTok, Instagram, Facebook, or one of the many other available platforms out there, most people today have some form of social media. Whether its influence has been overall good or bad has been the subject of many debates. The reality is much more complicated than a single net positive or negative, with much of its influence depending on the individual user and their tastes and mindset. This is even truer in the context of breast cancer social media engagement.
A Useful Tool
Research has shown that social media is a useful tool for those diagnosed with breast cancer. A study published in 2019 for the Journal of Medical Internet Research wrote about the positive effects social media can have for patients. Developing connections with others is extremely important for people, no matter the state of your health, and it’s especially important for those who have been diagnosed with breast cancer. The study acknowledged that in-person interaction is the ideal way to maintain these connections, but this may not be possible for some. They write how some patients may not have many supportive people in their communities to turn to, so social media can give them the support they have been looking for. There are extensive online communities that offer advice, education, and morale for patients, of which many can be found on Survivingbreastcancer.org
Social Media and Quarantine
The value of social media is highlighted well in the study from the Journal of Medical Internet Research, which was written in 2019, pre-pandemic. During COVID-19, however, the value of social media for breast cancer patients can’t be overstated. In quarantine, not only were breast cancer patients stuck in their homes and separated from many loved ones like everyone else in the world, but they were also one of the more susceptible populations to the virus. The study from the Journal of Medical Internet Research noted that cancer patients feel significant mental pressures on top of their physical ones. These pressures were amplified during the pandemic. This combination of being more susceptible to the virus, and being separated from the community during quarantine, made social media an important tool for breast cancer patients to keep their psyche healthy.
Spread of Misinformation
Though social media has certainly been beneficial for patients when seeking out communities, the spread of health misinformation on popular social media sites like TikTok and Twitter, has increased in the past few decades. A study conducted in 2021 by Victor Suarez-Lledo and Javier Alvarez-Galvez found that noncommunicable diseases, such as cancer, were one of the six health topics that misinformation was spread about the most on social media. The prevalence of health misinformation increased during the pandemic regarding masking and vaccine protocols. Since then, the reliance on social media for medical information has only grown. In July 2022, Google revealed that about half of today’s youth (18-24 year olds) use TikTok or Instagram instead of Google Search. More and more people are starting to trust what they see on social media even though studies, like the one by Suarez-Lledo and Alvarez-Galvez, have shown that misinformation is rampant on these sites. To avoid misinformation regarding breast cancer, after reading something on a social media site, double check with a medical professional in your life or visit trusted cancer sites such as Survivingbreastcancer.org, American Cancer Society, or Cancer.gov.
Ethics, Exploitation, and Permission
Another potential pitfall of breast cancer on social media is the ethics of posting about someone with breast cancer. Many people post about a loved one who has cancer, often in good faith and to spread awareness. If someone plans on doing this, they must get the permission of the patient to prevent exploitation. Especially if the planned post intends to share details about the patient’s battle no matter how significant, the patient must sign off on the post. Too often, breast cancer patients are exploited and social media provides another avenue for this exploitation. It gets trickier if the patient has passed away. This is when the questions of what and whether or not someone should post about a patient’s illness become more case by case. Someone can still be exploited after they have passed away and one should go to the greatest lengths possible to prevent this from happening. If the diagnosis is terminal, ask the patient what they are comfortable with you sharing and where. Permission is always necessary when posting about your loved ones.
Do What Feels Good For You
The effects of social media on the breast cancer community cannot be defined as completely good or bad. It is something that is dependent on the person and its involvement in a patient’s life and is completely up to them. During the pandemic, social media certainly was helpful for many, but then the following rise in misinformation online highlights its pitfalls. Use social media in regards to your cancer journey as you see fit. If you feel that a specific community is lacking in your life regarding education or support for your breast cancer, there are plenty of groups that you will be able to find on social media. Survivingbreastcancer.org has many that can be found on the website. But if you feel like you have everything you need in your life in person, don’t feel pressured to go to social media just because it is everywhere.
