Cancer is not a gift. I would know; I’ve had it. Twice.
Yes, cancer brought me meaning, connection and community. It’s even inspired my career path, leading me to roles in cancer organizations for nearly 20 years. But most of us who came to patient advocacy from a personal experience did it expressly so that others wouldn’t have to receive the same “gift” as us. Cancer wrought deep loss, fear and loneliness that I’d never wish on someone else.
[See: What Not to Say to a Breast Cancer Patient.]
When I was first diagnosed with non-Hodgkin lymphoma in 1993 at age 35, I was executive director of a contemporary art center. Cancer meant dealing with a life-threatening illness that few of my peers understood; an experience that felt alienating from family and friends — not mention completely out of sync with my career in contemporary art.
Cancer also meant relinquishing my fertility. Whether I would have had children or not, giving up “the possibility” of anything can be one of the deepest and most difficult aspects of a cancer diagnosis. It didn’t help that I was also adjusting to life as a newly divorced woman after a short marriage. (Fifteen years later, I found great happiness with my husband, Jonathan, and my adored stepchildren, Isabelle and Stephen.)
[See: The Fertility Preservation Diet: How to Eat if You Want to Get Pregnant.]
About two years after my diagnosis, I found my passion in patient advocacy. Cancer advocacy was a relatively new field at the time, and was primarily led by people who had been personally affected by cancer — either through their own diagnoses, or those of loved ones. And, like many of my friends and colleagues in the cancer community, my goals seemed simple, but were naively grandiose: change the experience and outcomes for those who came after me and change the public dialogue about cancer and other life-threatening illnesses. I wanted to touch people and change the system. I worked diligently alongside many friends and colleagues from all parts of the cancer community.
This was not the gift of cancer; it was the drive of purpose.
All through these years, I was aware of the late effects of treatment — both physical and psychological — but the fear of recurrence or a new cancer ebbed and flowed. Then my fear was realized: In 2014 at age 56, I was diagnosed with breast cancer. It is quite possible that the treatment for my first cancer caused my breast cancer. I have no regrets about the treatment that I had 20 years ago — it was the standard of care then and the cancer didn’t come back. But, if I didn’t agree that “cancer is a gift” the first time, I sure didn’t the second time — even though, and perhaps because, this experience too introduced me to a new cohort of friends and colleagues: two-time cancer survivors.
Over the course of my career working in cancer advocacy, I’ve seen an increase in the visibility of cancer survivors in society and more public discourse on the topic. Yet that’s not enough. Disparities persist in outcomes and access to treatment for underserved populations, and certain cancers are more “acceptable” than others (breast cancer compared to lung cancer, for example). And, while we’ve made clear progress in treating some cancers, too many remain incurable. Twenty years later, the same goals still inspire my patient advocacy work. I found, and continue to find, deep friendship and understanding in the cancer community and profound fulfillment in patient advocacy.
[See: 10 Lessons From Empowered Patients.]
But fulfillment and purpose are not the flip side of loss and alienation. The “cancer is a gift” perspective feels too reductive. For me, finding meaning and purpose in a life-threatening, life-altering diagnosis does not mean that what caused me to find meaning and purpose is a gift. It is so much more than that — belonging to the community of cancer survivors is both comforting and complex, personal and universal. Cancer is not a gift, but being part of the cancer community enriches my life in so many unforeseen ways — and that’s not a paradox.
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Stop Calling Cancer a ‘Gift’ originally appeared on usnews.com
