Coming Into Your Own: Receiving Support as an AYA Cancer Patient
When I was diagnosed with thyroid cancer in 2017 and again in 2021, I wasn’t told about the vast amount of online and in-person support groups or social media tools that were available, much less the Life with Cancer program at the hospital I was treated at. Instead, I found out about them when I decided to be brave and share my story on Instagram and Facebook and prayed for support and positive feedback. And once I did share my story, a whole new world opened up to me. I’m not talking about living as a survivor for the rest of my life, but rather the new family and community of shared experiences, extensive knowledge, and ultimately, the best support I could ask for.
Adolescents and young adults (AYAs) are often placed into two buckets: they’re either young enough to be placed with pediatrics or old enough to be treated as a full-fledged adult. However, that’s not the reality. As AYAs, we face a lot more than one would think. Maybe we’re in high school or graduating and about to attend college. We’re developing and strengthening relationships with friends and family, and perhaps a significant other. We might be on our parent’s insurance and have no idea how to navigate the stack of medical bills that come with treatment. We have a lot of unmet needs that the healthcare industry is only starting to meet. That’s where social media comes in to help with cancer survivorship. After all, it’s not a “one and done” thing.
Below are a few social media platforms and support groups/organizations I have found to be incredibly helpful, specifically for AYAs:
- Facebook – support groups are available for every cancer, and even variants of cancer. I have found that they provide a safe space for asking questions about symptoms, medications, what to expect during and after treatment, etc. (And, of course, venting!)
- Instagram – As the saying goes, “A picture is worth a thousand words.” While this platform is usually a highlight reel, showing the rawness of what we’re going through can be very empowering
- Twitter – Here, you can find tweet chats, patient advocates, healthcare organizations, and healthcare professionals (doctors, nurses, etc.). Nothing is off-limits!
- Pinterest – find recipes for patients going through treatment
- Our Odyssey – support group for AYA patients with rare and chronic diseases, including cancer
- Stupid Cancer – provides AYA cancer support groups
- Elephants and Tea – AYA cancer support group
- Lacuna Loft – AYA cancer support group
- Cancer and Careers – helps with getting back into and/or leaving the workforce; discusses disability rights
Carly Flumer is a young woman who was diagnosed with stage I papillary thyroid cancer at the age of 27. She recently received her Master’s degree from Boston University in Health Communication and received her Bachelor’s from George Mason University in Health Administration and Policy. While being diagnosed with the “C” word at such a young age was a surprise, as it would be to anyone, she found strength, support, and inspiration in sharing her cancer journey on social media. As a result of her health outcome, she looks to advocate for other cancer patients through education, research, and health literacy.
