By Tonia Farman
It’s ironic that my younger brother, Scott, passed away of Leukemia nine years ago today on National Cancer Survivors Day. He was 19.
What’s also ironic is that I’ve learned more about surviving cancer as a young adult after his death. That part has come through his legacy. What I know is this: Survivorship is just as hard as fighting the disease itself for young survivors.
There’s the depression, body insecurities, incurred debt, false appearance of health, infertility, fear of recurrence and a lost sense of purpose.
‘Surviving cancer’ is wracked with stigmas survivors can’t shake, and this assumption that once the remission party confetti is swept up and the extra cake is plastic-wrapped, everything in the survivor’s life goes back to “normal.”
That’s not even a little bit true.
For the approximately 70,000 young adults diagnosed with cancer each year in the United States, the truth is that they’re not the same person they were before cancer, and they face challenges that other survivors don’t.
Take dating for example. There’s a stigma attached to cancer that drapes over dating life. Do you just drop, “Hey, I had cancer.” on the first date?
That’s not easy to unload, and it’s not exactly light conversation. If that situation goes sour, imagine what that would do to a survivor’s self-confidence.
Or, consider the social challenges. Survivors get ghosted by their own friends because they feel uncomfortable talking about cancer.
The National Cancer Institute (NCI) says a “desire for normalcy” can keep AYAs, or adolescents and young adults, from sharing their cancer experience with heathy peers, which adds to their sense of isolation. That’s why NIH says follow up care to address the late effects and psychosocial needs is particularly important for young adults.
After treatment, young survivors return to a world that expects them to snap back into the mold, into their old selves and the life they once lived. Everyone’s like, “You’re healthy, you’re young. You’ll get back after cancer, no problem. You’ll beat this. You got this!’”
But it’s not that easy.
We harm survivors when we question why they don’t act or feel the same as they did before cancer because it creates a culture of shame. It shames them for feeling weak and ungrateful, even though they have every right to feel whatever they feel.
Our society’s adoption of this belief that young people—no matter the circumstance—are indestructible has led to a lack of resources to help young adult survivors sort through these feelings. Historically, young adults have been “left behind” by research and support from the medical community, forgotten between the pediatric and older adult treatment settings.
I know how this goes because as my brother struggled through chemotherapy and a short-lived remission, there were almost no resources out there that addressed his unique needs as a young survivor. He briefly returned to college at one point and felt this total disconnect among his friends. He had no interest in partying; he was like 18 going on 30 and burdened with sickness.
After Scott passed, I became determined to help young survivors heal in a way that the healthcare system alone couldn’t.
One of the ways Scott found solace during treatment was through the outdoors. In Scott’s honor, I founded Athletes 4 Cancer, a nonprofit that helps young adult survivors reclaim their lives after cancer through the community and connections made through outdoor adventures. We teach them how to surf, ski, snowboard or standup paddle, and it’s through overcoming this challenge with their “cancer body” that many survivors find a renewed sense of purpose, confidence and hope. More important is the camaraderie they find with other survivors and the healing power of accepting, and even feeling inspired by, their “new normal.”
This is my brother’s legacy, and I’m proud of it, but we can all do more to help young survivors accept their “new normal” after cancer.
- Refrain from discussing your own personal struggles that aren’t relevant to cancer.
- Offer to take them to do something completely out of routine.
- Encourage the survivor to share what life been like since treatment. (“How are things different for you?”)
- Respect their post-treatment struggles rather than discounting them.
- Offer an ear to listen. Listen intently and be open-minded.
Let’s let go of our expectations for young survivors to be as they once were, and be there for them as they are now.
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