Stories from Wildfire: From Nothing to Lose to Everything to Gain
A Conversation Between Friends With Breast Cancer, One An Early Stager and One Stage IV
April: Becky, thanks for chatting with me today. There’s an aspect to your living with MBC that I’d like for us to explore a bit… when I met you a few years ago, you were not “out” in the community as having Stage IV breast cancer. Your friends knew that you had had Stage III breast cancer a couple years prior, but did not know about your recurrence. Was this a conscious decision? Who knew and who didn’t?
Becky: This was a very conscious decision. I wasn’t ready for everyone to know that it had recurred and was now terminal. I didn’t hide it from anyone who was in my day-to-day life, but I didn’t put anything up on Facebook, and I was pretty guarded about who else I told. It took me years to open up beyond my immediate circle of family/friends. At that time I was still working, and I was still hopeful that my husband and I might find a way to adopt a child one day. I was terrified that my clients would find out about my diagnosis and that it would impact my business (I was a freelance writer/editor at the time). Indeed, when some clients did find out, I actually did lose their business because they assumed I would be unreliable. So I was very careful. The adoption fear was a bit irrational, because of course any adoption agency would know about my medical history and status, but I had it in my head that being public about what I was going through would somehow negatively impact my chances of having a family.
I was also scared of unwanted sympathy and attention. I wasn’t ready for a bunch of people who I barely knew to tell me how sorry they were for me, because I was still processing the severity of my situation myself.
April: How was it for your family that you kept this secret?
Becky: It was never really a “secret” – I told my family that they could tell whoever they wanted, but at the same time, they knew that I was guarded about it, so I think they were careful about what they said to who. I think that was hard for some of them. It meant that everyone had to constantly watch what they said, which I think was stressful.
April: Would you say shame was a component of your keeping your diagnosis private?
Becky: No, shame wasn’t necessarily a component, but fear definitely was. I was never ashamed that I was/am sick, but I was scared of how people would react and how much I would have to manage those reactions.
April: Now you are open about your diagnosis – what changed?
Becky: I got brain mets. That was the turning point, for a couple of reasons. First of all, it became crystal clear and very in my face that my health could turn at any moment, very quickly, and drastically, and that we desperately need more funding for MBC research. I decided that I wanted to help fund raise for MBC, help with awareness and education efforts, and essentially help the MBC community however I could – and that all outweighed my personal need for privacy. Second, brain mets took working and adoption off the table, so all of a sudden I had nothing to lose by going public.
There were a lot of pros to opening up. It was very freeing for me, but I think also for my family. All of a sudden I didn’t have to watch what I said when I was around friends of friends. And, more importantly, it allowed far more people to be there for us and support us. It made me realize that I had to give people the opportunity to be there for me in order for them to support me. The amount of love and support that we received – and continue to receive – was overwhelming in the best possible way. Finally, going public opened up this whole world of MBC advocacy that gave me a much needed sense of purpose back.
April: Do you ever wish your status was still unknown, or do you ever wish you had been open from the start?
Becky: I’ve never found myself wishing that my status was still unknown. I really enjoy MBC advocacy, and all the support that I get from people who I never would have thought to tell individually has helped me tremendously, and has strengthened a lot of friendships. That said, I also don’t wish that I had been open from the start, because I just wasn’t ready back then. It would have overwhelmed me. I went public when it was the right time for me.
April: As an MBC advocate, do you think everyone should be “out” when it comes to being Stage IV?
Becky: I absolutely do not think that everyone should be “out” – it is such a personal decision, and it’s not the right one for everyone. Some people do have job considerations to keep in mind, some people would find it overwhelming – I think that everyone knows what’s best for them, and that’s not for me to judge. That said, if what’s holding someone back from going public is fear, I would encourage them to work through that, because it really was very freeing for me to let go of that.
April: Do you think being able to tell your personal story helps with your fundraising/advocacy?
Becky: Telling my personal story has helped tremendously in my fundraising and advocacy efforts. People need to be able to put a face to the disease and really understand how it affects real lives. That helps develop empathy and understanding, which eventually, I think, translates into research dollars, because people become more motivated to help save our lives. That’s one reason I try to be very honest in my writing about what I go through.
April: Are there times now when you keep your MBC status private?
Becky: Not anymore. So much of my diagnosis and life is already in the public sphere that it wouldn’t make much sense to try to keep my diagnosis private anymore. I have a public blog about having MBC; I co-wrote a film (bare) that has gained quite a bit of publicity; through bare I have been on panels, the radio, and podcasts to discuss having MBC; one of my pieces about having MBC was published in GLAMOUR; I’ve had a number of interviews published in other magazines and publications; and all my Facebook posts are public. I’m very open these days.
April: Any parting advice?
Becky: If someone were contemplating whether or not to tell people about his/her diagnosis, I would encourage them to really think through what’s holding them back. If it’s concerns like losing a job, it might be the best decision to keep their diagnosis within their immediate circle. If it’s fear about being judged or alienated or anything like that, I would encourage them to work through those feelings and focus on how much there is to gain from letting people know. I think most people would be astounded by how much support they get once they let people know what they are going through.
Rebecca Hall Dickson is the cowriter of and the inspiration for the short film Bare. As a Stage IV metastatic breast cancer (MBC) patient and advocate, she advocates for more funding, research, and awareness of MBC. The Pink Agenda recently recognized Rebecca with the Lisa Mae Lee Award for her work in the MBC community. Rebecca is also a certified yoga instructor and teaches free yoga for women with cancer in her hometown of Santa Cruz, CA. She has a blog, Cancer You Can Suck It, and her writing has been published in Glamour, WILDFIRE, and the Underbelly. In her latest project, Harriet + Ginger, she makes and donates free lavender eye pillows for cancer patients, their loved ones, and providers. If you would like to purchase an eye pillow (profits go towards free eye pillows for cancer patients) or make a donation, please visit harrietandginger.com. Rebecca lives with her husband and her dog, Harriet.
April Johnson Stearns is the Founder, Editor-in-Chief of WILDFIRE Magazine. Diagnosed at 35; IDC, stage IIIb, HER2+, ER/PR-. April grew up on a 43-acre Christmas tree farm with horses, chickens, dogs, cats, and a couple of co-conspirators in the form of younger brothers. The closest neighbor was a half-mile away. Like most who don’t know what they have till it’s gone, she spent her teen years desperate to be “normal” and live in a town. Now she lives with her husband and young daughter on the coast of California in a real-life town where she can see and hear her neighbors almost all the time, but she can also ride her bike down to the beach at a moment’s notice to watch the sunset. Although she does love town life, she also likes to get away from all the hustle and bustle whenever she can to hike in the woods. Wildfirecommunity.org
Editor’s Note: This piece has been republished with permission from April Magazine, the “Mental Health” issue (Vol 3, No 2, Copyright (c) April 2018 by April Community LLC). More information available at wildfirecommunity.org
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