Misconceptions, Hard Parts, and What Others Ought To Know

One of the largest misconceptions about facing cancer as an AYA is the idea that life goes back to “normal” after treatment is over. We hear this a lot, but too often the important people in our life fail to grasp this concept.

Even for those of us who are lucky enough to be “cured” (or just cautiously optimistic about the cancer being truly gone), there are many complex and difficult layers to our survivorship.

I find that often, for people who have had cancer touch their lives personally through a friend or family member, there IS an awareness of the first and most superficial layer–the one that is most accessible to other people’s understanding. This layer refers to the fact that we will always carry a little bit of fear and anxiety over the possibility of the cancer returning, or a secondary cancer developing.

Most (if not all) of us will worry about this to some extent for the rest of our lives–no matter how good the statistics are, or how favorable the outlook given to us by our oncologist. Even a low-percentage recurrence rate (for those of us who are lucky enough to have a low-percentage) is not as reassuring as you might think, when you remember that the chances of getting cancer to begin with were, presumably, astronomically low. So the story has already been written into our brains: ours is the story where the unthinkable becomes reality; it is the story of the main character who has the very bad thing happen to them–regardless of the low probability.

There is another obvious, adjacent layer that is also somewhat understood by people who have had close relationships with cancer survivors. This layer has to do with sadness and grief: we will always carry a bit of deep sadness for the person we were before cancer, and for the person we could have been, had cancer never happened. Yes–cancer often affords us the opportunity to grow in ways we otherwise would not have, and to meet some truly amazing people along the way–but this doesn’t diminish our soul’s aching over what-could-have-been for us. Our victories after cancer are because of us, not because of cancer–and who knows how much more triumphant we could have been, had we not been now saddled with these heavy physical and psychological bags to carry with us.

And there are some things that are not at all abstract, or philosophical, or hypothetical: some of us will never be able to have biological children because of cancer. Full stop. That alone is an unspeakably sad and difficult reality for some of us to bear. Many of us also have chronic pain for the rest of our lives–maybe it’s mild, maybe it’s more than mild, maybe it depends on the day–but even mild chronic pain, in this context, also serves as a constant nagging reminder of the worst and most traumatic experience of our lives. Cancer is often the gift that keeps on taking. Many of us must wrestle constantly with the acceptance of what we have lost, and the extra harshness and the extra brittleness to our lives that has been added.

And then we get to some layers that truly fall outside most people’s understanding or perspective, and this of course can feel incredibly isolating, at best–and at worst, it can strain some of the most important relationships in our lives. When a significant other, or a sibling, or a parent, or a child, or even a very close friend does not acknowledge (or cannot fathom) your struggle and your experience–it can lead to friction, resentment, a wedge between people who are supposed to be your people, who are supposed to be your most loyal and stalwart support system. And you NEED this support system, more than most, because of the many and difficult ongoing physical and mental issues after cancer.

Here’s a hard truth that I have had to learn first-hand: often, our cancer treatment leads to ongoing health problems. It could be neuropathy; it could be weak bones or muscles; it could be nutritional deficiencies; it could be digestive difficulties or discomfort; it could be problems with bowel movements; it could be cardio-pulmonary issues or risks; it could be secondary syndromes related to hormone levels; it could be issues with our sexual health or function; it could be side effects from medications that we are forced to be on for the rest of your life because of our cancer treatment. The list goes on and on. And often, for a survivor, it is unfortunately more than just one of these issues after cancer; it can feel like a whole army of health challenges to contend with.

After going through such a difficult experience, and already losing so much, you want more than anything to have a life that is not plagued by health problems, stresses, and doctor appointments. But often that is exactly what we get–along with having to constantly advocate to have our side effects taken seriously–along with having to navigate insurance issues and red tape–again, the list goes on. So when, on top of ALL of this, your close friends or family do not understand why you are exhausted, or annoyed, or just not feeling well enough to meet their expectations–it becomes overwhelming and it can feel like you just don’t fit in your world anymore.

Commonly, the close people in your life will begin to attribute your problems to anxiety and trauma–which does come into play, to be sure–but so quickly will they neglect to respect your knowledge and sense of your own body. Their intentions are often good, but unwittingly they will contribute to the greatest wound of all, the human phenomenon that can be so terrible to live with: the feeling of not being understood or believed.

There is a deep human need to be seen, to be understood, to be believed. One of the hardest things about being an AYA survivor is the way in which your experience and your life becomes shaped with so many barriers to this core emotional need.

So remember: if there is an AYA survivor in your life–one of the best ways you can support them is to be the kind of person who shows up in the way that they need. That doesn’t mean you have to have all the answers (or any answers for that matter!) or pretend to understand what you certainly can’t relate to. But it can simply mean acknowledging that they are the experts of their own experience. It can mean acknowledging that in this context even little things can feel so hard. And most importantly–it can mean showing them in your words and in your actions that you receive all of their words, and all of their actions, with the credibility and authenticity that they wholeheartedly deserve.

Remember, sometimes it is the most simple act of acknowledging, validating, and believing people that can provide the most extraordinary form of connection and support. And sometimes this can make all the difference.