Why you should care
Where medicine has failed to find a cure, women are banding together using social media to find solutions to interstitial cystitis, a painful bladder condition.
At the worst stage of her condition, Jessica Parks was using the bathroom 70 times a day, living in a pain she describes as “slow suicide.” At the peak of Sunny Morrow’s struggle, she “couldn’t stand upright” and was “peeing knives” every day. Brittany Auerbach too felt “crushed” and “debilitated.” All three women suffered from interstitial cystitis (IC), a highly painful bladder and pelvic condition that Auerbach describes as like having “a never-ending urinary tract infection (UTI).”
Except that unlike with a UTI, there is no official cure, treatment or even a recognized cause for IC. Meghan Pauley, a nurse practitioner with Novant Health who specializes in urogynecology, says that “for the longest time in the medical community, there was a culture of disbelief about this syndrome,” even though “it’s real, it’s painful and it’s life-changing.” But when Parks, Morrow and Auerbach were told that the chronic pain they suffered would be their lifelong reality, they refused to accept it. They each discovered a combination of diet and lifestyle changes that cured them of their pain from a condition that, to the formal medical community, remains a mystery. They didn’t turn to alternative healers — the support and help they needed came from a community of fellow female patients that has emerged on social media, demonstrating that women, when failed by medicine, don’t fade away. They fight back.
More and more female IC patients are using blogs, vlogs and YouTube channels to offer tips and tricks and discuss challenges. YouTube hosts at least 280 videos on IC in women, of which almost 200 have come up in the past six years. At least 33 million blog posts on “living with IC,” written mostly by women IC patients for others with their condition, populate the internet, Google’s search engine suggests. And the producers of these videos and blogs are seeing just how much demand there is for what are effectively cure and therapy platforms created by women, for women.
A girl with IC wants one thing: to be believed.
Jessica Parks, social media advocate for IC cures
Popular videos on Auerbach’s YouTube channel, Montreal Healthy Girl, receive upward of 500,000 views. She also receives “hundreds of emails a month” from people “all around the world,” thanking her for her content and seeking her counsel. Some of the more popular videos on Morrow’s channel, Sunny’s Book of Healing, have received more than 100,000 views.
“When I was first diagnosed [in 2011], there were virtually no channels that talked about IC, but in the past few years I’ve noticed a definite uptick,” says Auerbach. “The videos I post on YouTube are not just for people now, but for everyone who comes after me.”
Studies estimate that between 4 million and 12 million Americans suffer from IC, 90 percent of them women — a gender tilt that is global. Similar estimates suggest at least 1.4 million British women and 1 million Indian women also suffer from IC — levels of diagnosis in India are much lower than in the West, so actual numbers are expected to be far higher. While there are no clear explanations for why women suffer more than men, the incidence of IC tends to coincide with other conditions like fibromyalgia, which causes severe muscle pain, and irritable bowel syndrome, which are also far more common in women, says Pauley. “We do think that at least some element of it is genetic.”
(Brittany Auerbach talking about IC on her YouTube channel.)
For the women who’ve found a cure that works for them, the answer hasn’t come from antibiotics (used to treat UTIs) or painkillers (used to alleviate symptoms). Morrow tried a “very radical shift away from meat, dairy, grains, caffeine and sugar,” eliminating “everything but vegetables, greens, sprouts, some sweet and nonacidic fruits and water.” According to Morrow, this diet change cured her of “crushing pain” in just three months. Her simple mantra? “Just remember: Acids burn and bases heal.”
Parks went on a similar journey, though she took longer to beat IC. On top of pelvic floor physical therapy, ozone therapy and emotional healing, Parks used an alkaline elimination diet (which, according to its practitioners, reduces acidic foods to maintain normal pH in the bloodstream), herbal antimicrobial protocols (to help combat bacteria overgrowth) and suggestions from popular herbal medicine practitioner Dr. Robert Morse. Ultimately, she says, “Fruits and vegetables saved my life.” She says she “lived off of six foods for about six months, and it took me about four years to heal.”
Once convinced that their treatment strategies work, these women share those on their YouTube channels and blogs. But unlike doctors, their recommendations aren’t based on peer-reviewed medical research but personal experiences, even as their posts — drawing hundreds of thousands of views — make them influential among women desperate for hope and answers. Is that dangerous? Like with the condition, the answer is complex, suggests Pauley.
“While I would never follow only the advice of someone on YouTube for medical issues because IC treatment is so experimental, hearing what works for other people can’t hurt,” she says. Still, she cautions against anyone telling you they have a definite cure if they don’t have data to back it up. She says it’s important to “remember that not everything will work for everyone.”
Indeed, there doesn’t appear to be a one-size-fits-all approach to treating IC — even among the women who have shared their personal recipes for pain relief. In January, when Interstitial Cystitis India, an online forum of women IC patients in India, suggested “concentrating on fruits and vegetables” as part of a way to help with the condition on its Facebook page, Elizabeth Clark, a follower from Toronto, wrote back saying that the strategy didn’t work with her. “Fruits and vegetables cause me tremendous pain and ‘huge flares,’” she wrote. “Everyone is different when it comes to IC.” The Indian group acknowledged Clark’s point.
Still, the power of social media for women suffering from IC isn’t restricted to its value as a compiler of personal cure strategies that might or might not work for someone else. For many women, IC-focused social media channels are a means to a community that understands them and is supportive.
“Social media saved my life,” says Parks. Initially, the people Parks met through these channels would at times stay up with her “until 6 am on social media platforms to tell me everything will be OK,” she recalls. “They recommended protocols or supplements when I had no other help. They listened to me cry when I had no one.” And they served as the inspiration for Parks to start her own YouTube channel, Jessica Parks, where she says “hundreds of hopeless women contact me a month.”
Sure, the women running these increasingly popular social media channels have sworn no Hippocratic oath. But until conventional medicine finds a cure for IC, the efforts of women to support each other and suggest cures through social media communities are only likely to grow.
“A girl with IC wants one thing,” says Parks. “To be believed.”