By Je Banach
The stories we tell play a major role in determining our health and wellness, as individuals and as a collective. Public narratives around chronic illness shape our healthcare system and determine everything from funding for research programs and availability of treatments to protections for the disabled and the day-to-day experiences of those who are ill. Erin Berman, a former content strategist and brand designer for Silicon Valley startups and multinational corporations—recognized by Forbes as “a natural speaker with an art for telling tales”—understands this. Later this month she will launch Superbloom, a social media platform meant to expand the conversation around women’s health. The site, which gives chronically ill women a way to connect with one another, will feature resources searchable by symptom, diagnosis, or treatment and offer support channels designed especially for the millions of women currently living with the kinds of illnesses that evade proper diagnosis and treatment.
The CDC estimates that more than 80% of women will experience at least one chronic illness in their lifetime, and millions of women are already living with chronic conditions. This writer is one. Berman is another. Superbloom emerged from the ashes of her own frustrating experiences with chronic illness and quest for better health. “When I was 26 I started experiencing weird symptoms impacting my energy, focus, digestion and weight. I went to a doctor who ran tests and found nothing, so my symptoms were shrugged off…Around a year later, I experienced a sudden onslaught of chronic symptoms: brain fog, chronic fatigue, mysterious rashes, numbness and tingling, Reynaud’s, cystic acne, severe abdominal pain, weight gain, IBS, and bloating. No one could agree exactly what was wrong with me,” Berman remembers. “Beyond gender bias, I experienced the skepticism of doctors and peers as test after test came back inconclusive. After receiving unsettling, vague diagnoses and being prescribed medications with serious side effects from multiple doctors, I began looking outside conventional healthcare.”
Berman hopes Superbloom will help destigmatize chronic illness and combat the excessive bias—gender bias, but also class bias and racism—that currently haunts contemporary healthcare. “We made Superbloom for womxn because we are so underserved by the medical community and the system of white supremacy, oppression and patriarchy that has traditionally dominated healthcare,” she explains. (In our emailed interview, Berman spelled women with an x, stating: “We choose to use womxn to indicate that all who identify as womxn will be welcome [on Superbloom], which currently is not the norm in our society. It’s important to us that all their voices are equally heard at the table.”)
In an alarming excerpt from the book Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick, author Maya Dusenbery demonstrates the gaping differences in the amount of time and effort it takes for men and women—especially low-income women—to receive proper diagnosis for the same illness. Meanwhile, the CDC website, which acknowledges grave inequities that put people in racial and ethnic minority groups at greater risk of illness and prevent them from receiving proper care, provides a reminder that “younger African Americans are living with or dying of many conditions typically found in white Americans at older ages,” and Black women are three to four times more likely to experience a pregnancy-related death than white women. “Whiteness should not dictate wellness, ever—but this becomes critical in matters of birth, life and death,” Berman says. The goal for Superbloom, she adds, is to get “to a place where inclusivity is the norm… Womxn deserve fair, balanced access to healthcare.”
Berman is setting new norms within her team as well: Superbloom is a women-founded and entirely women-led company in a male-dominated world of venture-backed tech businesses. The company’s advisors are powerhouses Meg Porfido, an attorney who serves as a member of the board of Kaiser Foundation Health Plan, Inc. and Kaiser Foundation Hospitals; Jennifer Lujan, Director of Social Impact for the cannabis software company Eaze; Jill Angelo, Co-Founder and CEO of Gennev, the first-ever online clinic for women in menopause; and supermodel Shalom Harlow, a women’s health advocate who recently spoke out about her own experiences with chronic illness. A team of medical professionals who are experts in women’s health will also help advise on content and community forum moderation, though Berman notes that ultimately Superbloom is meant to “empower women to track their health and receive community support in a way that can be complementary to working with their doctors.”
Ventures that support patient-advocacy efforts, and encourage the supplementation of traditional medical practices with alternative ones, are often subject to an onslaught of criticism from those who argue that self-advocacy can endanger patients or impede medical progress. With the chronic illness community poised to grow even larger as the COVID-19 pandemic and its long-haul cases continue, Berman argues that self-advocacy will be more important than ever. “If I had not been a self-advocate for myself, I would still be extremely sick,” she notes of her own experience. Those who argue against self-advocacy are often abled people who fail to ask the right question, namely: Why is there such an overwhelming need for these venues in the first place?
Debuting during a fiery election year where everything seems to be at stake, Superbloom illuminates the downright failures of our leadership and the American healthcare system meant to take care of us. The number one step that anyone can take towards a better and more equitable healthcare system and greater wellness for ourselves and our society remains a vote on Election Day this November, but having a place for community in the meantime is a revelation, especially for those who might not have had access to such resources and support in the early, mystifying days of their own illness.
“Too many womxn walk around in shame with invisible illness, chronic conditions and mysterious medical challenges. There is little space for acceptance of those who don’t have able bodies, visible or not,” she explains. Berman is already looking towards the future with plans to grow Superbloom with a telehealth model, a meaty content library, and a capsule-drop merchandise line. The merchandise program, including items designed by Raw Paw co-founder Jinni J., who lives with MS, is meant to create awareness around women’s health and bring in a percentage of proceeds for organizations that support this. Berman wants members to “gain the feeling of being seen, heard and valued for who they are and the experiences they have gone through in their unique body.”
“We believe there’s something powerful that happens when womxn have a safe space to come together,” she says. “We are hoping to be one of the places that can happen.”