Mental Health Awareness: “In Every Story, There’s Strength”
By Catherine Swift, MSW, LCSW, TCA Care Delivery Strategist
The theme for this year’s Mental Health Awareness Month is a belief close to the heart of the Teen Cancer America community. The AYAs who share their experiences with us on stage at events, through Play It Back songs, and as national advocates prove over and over again that sharing stories leads to change. This May, the National Alliance on Mental Illness (NAMI) encourages us all to increase mental health awareness through stories of resilience.
As an AYA clinical social worker prior to joining the TCA team, hearing the stories of young people with cancer was a privilege. In sharing their stories of struggling with anxiety, PTSD, depression, and distress during and after treatment, they were constantly teaching me how to better care for them and others in their shoes.
James* was diagnosed with aggressive leukemia at 19, right before he planned to go to college. I met him on his second day in the hospital, and though he was the type to never complain, it was clear this major change was overwhelming to him. During the months he spent in the hospital for treatment and for a bone marrow transplant, we talked for hours about Marvel movies, the strangeness of losing his hair, and his worries about how his family was coping. For the most part, James felt like he was handling things okay emotionally.
I got a call from James several months after his successful transplant. His team was happy with his complete remission and expected him to continue to recover fully. James, however, was finding himself staying up all night worrying that his cancer was returning. He spent the days pacing around the house or shutting himself in his room, unable to focus on reading or cooking or anything he enjoyed.
His older sister called me too – she had tried everything, along with his treatment team, to reassure him that he was still in a great remission. Nothing seemed to work. She worried his fears were spiraling out of control and impacting his ability to get his life “back on track” after treatment.
James, like so many cancer survivors, was struggling with treatment-related PTSD. I always informed my newly diagnosed patients that the mental and emotional side effects of cancer treatment, like anxiety and depression, are just as common as physical ones like nausea and fatigue. James was one of the many patients who taught me that this reality extends beyond treatment – patients can have chronic treatment-related mental health disorders just as frequently as they have chronic treatment-related physical issues like infertility and heart failure.
For AYAs especially, the mental health burden of a cancer survivorship is massive. Studies have shown that 1 in 3 AYA cancer survivors deal with psychological distress and anxiety, and 1 in 4 deal with depression**. These rates are higher than for older cancer survivors or for other AYAs without a cancer history.
Fortunately, James and his family felt empowered to speak up about his struggles, which allowed me to get him the help he needed. I was able to offer him focused, AYA survivorship-specific psychotherapy, thanks in part to TCA’s support of his hospital’s AYA program. Through therapy he was able to identify exactly what he needed to cope with the trauma of cancer, and has gone on to enroll in college, explore his interest in sci-fi writing, and build a supportive network of friends – within and beyond the AYA cancer community.
For this year’s Mental Health Awareness Month, I’ll be remembering the many powerful stories that taught me the importance of investing in the mental health of AYA cancer survivors. If you have a story of struggling and thriving through mental health challenges, I encourage you to consider sharing it. In every story, there’s strength.
*Name has been changed for confidentiality.
**Osmani, V., Hörner, L., Klug, S. J., & Tanaka, L. F. (2023). Prevalence and risk of psychological distress, anxiety and depression in adolescent and young adult (AYA) cancer survivors: A systematic review and meta-analysis. Cancer medicine, 12(17), 18354–18367. https://doi.org/10.1002/cam4.6435
https://www.nami.org/get-involved/awareness-events/mental-health-awareness-month/