What haunts me in the dead of night is often not the grim possibilities of never-ending cancer treatment or how soon I will be able to return to work, but the insensitive comments I am bombarded with. Cancer is mistaken to be a disease reserved for the elderly, with the occasional childhood leukemia tragedy, so I am not surprised that people misstep socially around adolescents and young adults with cancer. There are unique, concrete challenges for our age including financial and parental dependence, however, I have found that social interactions require a higher degree of nuance too often overlooked, as I hope to show you.
While I feel immensely supported by my friends and other young adults, something I have encountered as a young person with cancer is that older adults fail to take me as seriously as they would somebody their age or older. There is a pervasive belief that young people know and understand less about the world because they lack “experience.” A crucial part of supporting a young person with cancer is respecting her as independent, and recognizing that she is in some ways more experienced than an older, “wiser” person. There is no greater insult than to be told that someone understands what I am going through, in any sense. An older couple had the audacity to attempt to convince to me that they “certainly do understand my situation,” which stripped me of dignity and portrayed their ignorance.
A different type of comment that infuriates me is seemingly innocuous remarks about things I have lost: health, hair, fitness, and a plan for the future. While you technically can tell me about how you’re in the best shape of your life, or how you’re having such a hard time growing your long, flowing locks from 3 inches past your shoulder to 4 inches past your shoulder, I highly advise against it. To me, these types of comments signal a lack of social awareness and are at best falling on deaf ears and making me feel uncomfortable. As if I didn’t already feel like enough of a genetic failure by having cancer in my early 20’s, the treatment is harsh and leaves me feeling physically weak and unattractive. It is courteous not to flaunt the unobtainable, defining characteristics of a healthy young adult in front of those of us who lack them.
A foolproof rule of thumb is to never, ever ask someone what her prognosis is. When asked what my prognosis was upon relapse, I felt like little more than a statistic, and that the person that asked merely viewed me as a pawn in their narcissistic worldview. If you really are that curious, you can look up the statistics yourself, but please don’t indicate to me, ever, that you’re thinking about the prospect of my possibly impending death.
On another note, pity feels like forcing me to down a “drink me” potion, reducing my humanity to that of a helpless child trapped by the uncontrollable. The following excerpt from a card I received, despite its well-meaning intentions, actually made me more frightened for my outlook upon relapse: “My heart aches for you… I love how you have explored languages!” I felt like I was attending my own eulogy given the past tense, and the enormity of emotion only served to overwhelm me as I thought, “Is it really that bad? Should I be more scared?” The essential element to include in any card aimed at young people with cancer, specifically those with a good chance of being successfully treated, is unfaltering optimism.
Semantics are generally overlooked, yet may also profoundly affect any young adult as they have affected me. I rarely refer to myself as a “cancer patient,” as I feel the word “patient” is dehumanizing because above all I am a person. A human being who had a life before cancer and who struggles daily to prevent herself from being defined by her health struggles. Words often associated with cancer such as “warrior,” “fighter,” and “battle” imply that people with cancer have some degree of control over the success of their treatments, which is not the reality.
The simplest advice I can give to facilitate conversations with adolescents and young adults is this: be respectful, and genuine. We are forced to confront our mortality at a time in our lives when society tells us we are invincible, fearless, limitless. When this construct crashes down around us and shatters, we can feel vulnerable and nearly everything feels like a personal attack, an affront to our new approach to life. I hope that this post either enables you to more deeply support a loved one with cancer, or help you, as a fellow young adult, to know that your thoughts and feelings are valid.