What Brobe Learned at SXSW or "The Extra-Ordinary Truth About Cancer"

This week Brobe International had the good pleasure of attending the SXSW TradeShow as a MedTech Exhibitor!

Many survivors are intimately aware of the realities that come with recovery, but we believe that you shouldn't have to actually endure cancer in order to be literate in dealing with it.

Our mission at this year's SXSW was to gather the global audience in attendance, about the pain points of living with cancer and recovering. We wanted to validate the hypothesis that there isn't enough awareness about how to support those in recovery. So we tested it.

 

The Brobe Street Team

We made the most of the experience by activating a street team of awesome volunteers, recruited through our network of survivors. All of the women who helped us were breast cancer survivors, who have walked the road of recovery or who are currently on their path of recovery. 

Breast cancer survivors volunteered to help conduct a survey while sporting our flagship product, The Recovery Brobe, and bright colored wigs. Our gorgeous volunteers polled hundreds of passersby about their positions on cancer awareness and experiences on cancer awareness. We learned a lot...and we want to share. 

 

The (Quantitative) Findings

Unsurprisingly, the outcomes of our poll revealed:
  • 94.2% of people polled had personally been affected by cancer
  • 67.2% have known someone with Breast Cancer
  • 83.9% agree that there isn't enough awareness about the emotional and physical side effects of cancer to patients and caregivers

Many spoke to the reality that once diagnosed, the journey was only beginning.

"Recovery is a much longer process than simply diagnosis and treatment. It's never over and it takes years to get back any feeling of normal."

The Qualitative Findings

When asked if there was anything that they wish they had known to prepare, we had a spread of perspectives. A few people said, "There's nothing that can truly prepare you."

Another said, "Be your own advocate. Doctors have the best of intentions but they get 15 minutes with you and then they have to hop over to the next person living with a potentially terminal health condition."

In that same vane someone also said, "Doctors are too quick to push chemo, so just be aware of your options before you decide on a course of treatment." A lot of people agreed that there is a lot of terrifying information that create a slippery slope into depression. "Cancer diagnosis doesn't mean your life is over!"

The most prevalent point when it came to caregivers was a lack of knowledge and understanding about how to talk to people about their struggle. "We don't know what to say and how to be comforting and supportive."

Many wanted to better understand and support someone who was on their recovery journey. They largely acknowledged the stigma that affects cancer survivors: the isolation that survivors experience and the avoidance by those closest to them. 

"It's okay to talk about it, and ask people how they're doing."

One respondent said, "I wish that I had understood how important it was to just take advantage of tiny dignifying moments."

Beyond that was a deep desire to truly connect and empathize with people who are suffering, whether it be the patient themselves, or family members, friends, coworkers. This desire was largely inhibited by a misperception that discussion around cancer is taboo, especially talking to people who are living with cancer. There was a huge amount of anxiety about the potential for conversations to only make things worse. People were concerned about saying "the wrong thing." 

 

Conclusions

We confirmed our perception and overwhelming majority agree that culturally, we are underinformed about the realities of cancer recovery. The general amount of information and misinformation is overwhelming, depressing, and scary. Patients experience a high degree of isolation and despite wanting to help, most people don't know how to support them.

What was really uncomfortable for us, was the common theme around conversations and empathy (not sympathy) for people in recovery. Respondents "wished" that the knew what to say or how to be more supportive.

Here's a quick overview by Brene Brown on Empathy versus Sympathy: 

The strange part is that living with cancer isn't a unique experience. It isn't even a position reserved strictly for those diagnosed with cancer. Anyone can be living with cancer -- a family member, friend, coworker, acquaintance, your favorite clerk at the grocery store. For every person diagnosed, every person around them is now decidedly living with cancer and struggling to find the right words or actions to support their loved one. 

This is not to make the flagrant suggestion that cancer is a burden to everyone. Instead, we want to reinforce the opposite. The community is much larger than you think. People all around you are living in the same hell wishing that they knew how they could help.

Put it this way, if living with cancer were a "Members Only" club, fewer than 6% of the population would not qualify to be a member.

It's bizarre to think of cancer as normal, but for most of us, cancer is a part of living. It's something that we all have to deal with, at some point...and yet, we aren't anywhere near equipped to overcome the emotional and physical challenges, with dignity and grace. 

We want to change that.

We want to support survivors and caregivers by creating a space where we can share our stories, our discoveries, and our stresses. We're planning to rollout this community April 2019...and we're going to need your help. If you want to stay connected with us as we prepare to launch, just sign up for our mailing list. 

Your little contribution to this wealth of knowledge adds up to a wealth of golden nuggets for the betterment of humanity. I know, I know -- it sounds a little dramatic, but the numbers don't lie and 94% of people. 

In the meantime, we've put together a few resources to help you get the support you need. Never hesitate to reach out and let us know about your experiences, and what you think of this post!

About Brobe International

Brobe International is a fashion tech company that develops adaptive clothing & accessories for recovery patients. Since 2011, we have served over 20,000 women recovering from breast cancer & other major surgeries, with thoughtfully designed, award-winning, comfortable, and practical yet luxurious apparel and accessories. Brobe is donating 10% of online sales to The Breast Cancer Resource Center (www.bcrc.org).

 

About SXSW

SXSW dedicates itself to helping creative people achieve their goals. Founded in 1987 in Austin, Texas, SXSW is best known for its conference and festivals that celebrate the convergence of the interactive, film, and music industries. The event, an essential destination for global professionals, features sessions, showcases, screenings, exhibitions, and a variety of networking opportunities. SXSW proves that the most unexpected discoveries happen when diverse topics and people come together. SXSW 2019 will take place March 8-17, 2019.
SXSW 2019 is sponsored by Bud Light, Mercedes Benz, Capital One, Uber Eats, and The Austin Chronicle.


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