Deeply resonated with this powerful note, Dr Stacy. Often patient voices are celebrated but not respected, especially when companies benefit without offering fair compensation or support.
This callout is timely, necessary, and courageous.
And thank you for sharing what a better way of standing up for dignity and equity looks like.
I would be curious to know how other childhood cancer survivors would experience sharing their story. Mine makes me feel complex emotions and is unique to my environment, however, maybe this resonates with others.
I was 4 when I was first diagnosed and 8 when I was taken off treatment, which makes cancer my earliest childhood memory. As I grew into young adulthood, I began sharing with more people about my past and background, and cancer became an "object" in my story.
I learned and experienced how it made others feel, how it made me feel sharing, and the types of attention it gave me.
To be honest, I didn't like the attention. But then, as a survivor, I felt obligated to share my story more powerfully or profoundly because it's the voice that was given to me. I felt like I needed a platform to share my story, but it became another cyclical pattern, doing it out of obligation, to guilt, to freedom, and back to obligation.
For anyone who has experienced a chronic and fatal illness, there is pressure to make oneself stand out more in a crowd(audition for The Voice, America's Ninja Warrior, Survivor...) or blend in and hide one's medical background. But I think that there is a magical place where I've learned that my uniqueness and giftedness exist with/without cancer. And my cancer story doesn't make me unique or make me more special than an average person.
There was probably a time in my life, admittedly, where I felt like the best thing I could do was "sell my story," not so much anymore.
I really connected with this post and will be spending more time thinking about it. Thank you!
You write more eloquently than I about the tension that exists between the pull to blend in and the obligation (calling?) for survivors to speak up. As you note, the balance changes over time and through life seasons. That longitudinal shifting is not something that I thought about, and I thank you for sharing it. I am honored that you connected with the post and hope to hear more.
Dr. Stacy. I love the fact that you bring up the "familiar" patient story. I've been around it also for the 23 years of my own survival, and I've learned a few things from my years:
1. Patients LOVE to tell their stories. "I've got the most unique story in the world, and I'm going to you every hairy detail of it."
2. Don't ever give a patient a mic at a conference of any kind. (Have your hook ready!)
3. My own story is so, so boring......especially because I'm still my annoying self AND I'M STILL HERE.
4. NO, I don't want to learn that there is yet another non-profit out there ready to produce "your cancer story" --there are too many already!
5. Patients who decide that they are some kind of hero because they've survived. (Too many of those as well!)
Please, please give me patients who understand that their job is now to help other patients. They've been given the Gift of Life for a reason; they now have the obligation of serving others.
There is a reason that the NYT Modern Love column no longer accepts stories about cancer.
For an individual, the experience of cancer is often life changing. Rarely do "normal" people get to experience sometimes literal life and death. Those stories are important to that person and those around them.
The perspective that sometimes gets lost is how few newly diagnosed patients turn to the experience of unrelated other survivors for tips and inspiration (except if its on social media!). I encourage patients who are moving towards cancer evangelism to wait at least a year. Fully processing what happened to them is the most important work. Only then can they decide if they are ready to meet others at the beginning.
Thanks for reading, Erika! Always good to hear your perspective.
Deeply resonated with this powerful note, Dr Stacy. Often patient voices are celebrated but not respected, especially when companies benefit without offering fair compensation or support.
This callout is timely, necessary, and courageous.
And thank you for sharing what a better way of standing up for dignity and equity looks like.
I would be curious to know how other childhood cancer survivors would experience sharing their story. Mine makes me feel complex emotions and is unique to my environment, however, maybe this resonates with others.
I was 4 when I was first diagnosed and 8 when I was taken off treatment, which makes cancer my earliest childhood memory. As I grew into young adulthood, I began sharing with more people about my past and background, and cancer became an "object" in my story.
I learned and experienced how it made others feel, how it made me feel sharing, and the types of attention it gave me.
To be honest, I didn't like the attention. But then, as a survivor, I felt obligated to share my story more powerfully or profoundly because it's the voice that was given to me. I felt like I needed a platform to share my story, but it became another cyclical pattern, doing it out of obligation, to guilt, to freedom, and back to obligation.
For anyone who has experienced a chronic and fatal illness, there is pressure to make oneself stand out more in a crowd(audition for The Voice, America's Ninja Warrior, Survivor...) or blend in and hide one's medical background. But I think that there is a magical place where I've learned that my uniqueness and giftedness exist with/without cancer. And my cancer story doesn't make me unique or make me more special than an average person.
There was probably a time in my life, admittedly, where I felt like the best thing I could do was "sell my story," not so much anymore.
I really connected with this post and will be spending more time thinking about it. Thank you!
You write more eloquently than I about the tension that exists between the pull to blend in and the obligation (calling?) for survivors to speak up. As you note, the balance changes over time and through life seasons. That longitudinal shifting is not something that I thought about, and I thank you for sharing it. I am honored that you connected with the post and hope to hear more.
Dr. Stacy. I love the fact that you bring up the "familiar" patient story. I've been around it also for the 23 years of my own survival, and I've learned a few things from my years:
1. Patients LOVE to tell their stories. "I've got the most unique story in the world, and I'm going to you every hairy detail of it."
2. Don't ever give a patient a mic at a conference of any kind. (Have your hook ready!)
3. My own story is so, so boring......especially because I'm still my annoying self AND I'M STILL HERE.
4. NO, I don't want to learn that there is yet another non-profit out there ready to produce "your cancer story" --there are too many already!
5. Patients who decide that they are some kind of hero because they've survived. (Too many of those as well!)
Please, please give me patients who understand that their job is now to help other patients. They've been given the Gift of Life for a reason; they now have the obligation of serving others.
There is a reason that the NYT Modern Love column no longer accepts stories about cancer.
For an individual, the experience of cancer is often life changing. Rarely do "normal" people get to experience sometimes literal life and death. Those stories are important to that person and those around them.
The perspective that sometimes gets lost is how few newly diagnosed patients turn to the experience of unrelated other survivors for tips and inspiration (except if its on social media!). I encourage patients who are moving towards cancer evangelism to wait at least a year. Fully processing what happened to them is the most important work. Only then can they decide if they are ready to meet others at the beginning.
Thanks for reading, Erika! Always good to hear your perspective.