Remembering Why I Share My Cancer Diagnosis

“Before you quit, remember why you started.”

At a work conference, we recently had to go around the room and share our “why.” Why do we get up and go to work every day? I jokingly responded, “To pay for my mountain of medical bills.” But it got me thinking about a different why, why I continue to share my story, take interviews, work with organizations, and make bladder cancer a second job at times.

Sharing my life with Bladder Cancer

I have been living and sharing my life with bladder cancer for nearly 5 years now. At times it feels like a chore. More often it feels strange, especially now, because I’m not “sick.” I’m not sure how to talk about this new stage because frankly there isn’t much to talk about. I go to work, I live life, and do mostly very normal and very boring things. But recently I’ve realized that this too is a stage of cancer life worth sharing. I know, even at my sickest, I would have liked to read about and see someone talk about thriving after a bladder cancer diagnosis, to see that survivorship is possible.

Time brings more education about my condition

I’ve also found there is still a great deal of knowledge I can share reflecting on my entire experience knowing what I know now. I am a much more educated bladder cancer patient now. I’ve walked through so many chapters of this disease that I feel more confident providing education and resources to those newly diagnosed or veterans of this disease. What was scary and unknown two years ago, is now something I’ve thoroughly discussed with my medical team and had the opportunity to research. Statistics I was given five years ago have now changed completely because the science around bladder cancer and its treatment has progressed.

These days I make a point to remind myself why I started before I let myself quit. I started curating my public-facing social media, writing articles and blog posts, and sharing pictures, all because I wanted to find someone like me when I was diagnosed. I wanted to hear from a real person, a person closer to my age, someone who could answer the million questions I had that the doctors couldn’t. So when my inbox is full, I remind myself that one of those messages is from a newly diagnosed me. She needed someone to talk to.

Talking about your diagnosis requires vulnerability

Talking about your diagnosis and journey with cancer is hard. It requires a level of vulnerability and at times intimacy that can be uncomfortable. You’re sharing an experience that is deeply personal. But I encourage everyone to share when they feel able to. As varied as our experiences are, there will be someone out there who will relate, who will find inspiration, who will gain knowledge, who will find a sense of community. If bladder cancer has taught me anything, it is that this disease can be very isolating.

Remembering my “why” has helped me feel more connected to the broader bladder cancer community, to reach out to virtual friends I haven’t checked in with lately, and to talk about my experience with fresh eyes. I am always remembering new details, viewing moments with more education, and finding ways to use parts of my story to teach and raise awareness whenever possible.