Black Women Turn to Internet to Battle Mystifying Illness

Black Women Turn to Internet to Battle Mystifying Illness

Polycystic Ovarian Syndrome (PCOS) kept in the closet too long

by Driadonna Roland, April 7, 2016

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Black Women Turn to Internet to Battle Mystifying Illness

When singer Chrisette Michele was featured in EBONY’s “Body Brigade” issue in March, she and her fellow full-figured bombshells dished intimate details of their lives. Amid the candid discussion was a moment of education, as the ladies were asked whether they’ve dealt with weight-related illnesses. 

Michele revealed that she has been living with polycystic ovarian syndrome (PCOS). ”It’s definitely something I have to stay on top of,” she said. 

The fact is PCOS is prevalent. Between 5% and 10% of women of reproductive age (18–44) are affected, and as many as 5 million women in the U.S. may suffer from it. According to the National Institute of Child Health and Human Development, PCOS may affect girls as young as 11 who haven't even had their first period.

For a condition that is increasingly common, estimates suggest less than 50% of women have been diagnosed. Whether you have it or have never heard of it, the question remains: What exactly is PCOS? That’s a straightforward question with a puzzling answer.

“PCOS is part of a constellation of symptoms,” says Dr. Shannon Clark, associate professor in the department of obstetrics and gynecology at UTMB-Galveston in Galveston, Texas.

“I think the most prevalent ones, or the ones that women probably pay attention to the most, are the problems that they start to have with their menstrual cycles,” she says. “They may be irregular; they may go months and not have one; they may have a couple in a month.”

Other symptoms will be more cosmetic. There might be skin changes, such as acne in atypical places. There might be hair loss or hirsutism — hair on areas of the body that are abnormal for females. This could be because women with PCOS are described as hyperandrogenic, meaning there are elevated levels of androgen, commonly known as testosterone.

The symptoms don’t end there. Infertility, low sex drive, mood swings, anxiety, and depression are pervasive. Insulin resistance is so common in women with PCOS that metformin is one of the first methods of treatment doctors tend to prescribe, a drug that helps increase the body’s sensitivity to insulin. This is why PCOS can sometimes be misdiagnosed as diabetes.

So if PCOS presents itself in so many ways, why did Michele say it was weight-related? Well, there has been a correlation: Up to 80% of women with PCOS are obese. 

With such a dizzying array of symptoms, it’s easy to see why the syndrome is underdiagnosed. Many women say that even when they receive a diagnosis, their doctors do not equip them with enough information to tackle these myriad issues. So women are mobilizing online to help each other.

One such site for support is HelloPCOS, created by Chris Joseph who was diagnosed as a grad student in 2011. She wound up leaving the clinic and heading to Google for answers.

“I kind of realized that I had to take control for myself because the doctors were just giving me birth control and telling me when I wanted to have kids to come back,” says Joseph. “And I think that’s a lot of people’s story because no one knows what PCOS is. The doctors, the only thing they’re really concerned with, in my experience, are with giving you birth control and helping you to get pregnant, but there’s so much more than that.”

Now, between her site and its accompanying Facebook group, Joseph offers a treasure trove of information and a space where women can learn from each other. 

“I knew I wanted to start the website because I read an article that [said] most women seek information from the Internet about PCOS,” Joseph explains. “My background is counseling psychology and one of the biggest things that I really like about the Web is community.”

“So if one in 10 women in the world has PCOS, then literally everybody knows somebody with PCOS,” she continued, “There’s no reason that we have to fight this alone.” 

Even when being open about its symptoms can come with embarrassment, Joseph concedes.

“For so long all of these problems that I had had been like my little secret,” she reveals. “Stuff that I didn’t deal with or tell other people about, especially like in college when I would have to go put cream remover on my face to make sure I didn’t have a mustache.”

Clark agrees that embarrassment is keeping women from seeking the medical attention they need.

“A lot of women sometimes are embarrassed to go get information about it because they’re embarrassed their hair is not the way it should be, they have a little bit of balding, or they have some body hair where it’s not supposed to be,” she says. “They get embarrassed to even go to the doctor to talk about that. But it’s important to get that diagnosed early rather than waiting until your late thirties and early forties and you’re battling PCOS along with being advanced maternal age.” 

Joseph hopes women understand that PCOS is a lifelong journey, but one that can be managed with the right arsenal of information.

“In general for women that are newly diagnosed or don’t really know where to start or kinda just feel like something is wrong but they don’t know what’s going on with their bodies, the most important thing other than eating right is that you shouldn’t do it alone,” Joseph says. “There’s just so many people out there like you, so if it’s not the Facebook group or joining my website, talk to somebody — a friend, your mom, your doctor — just build your tribe around you so that you don’t have to deal with everything alone.”

Driadonna Roland is a Brooklyn-based writer and editor who's always the realest in the room. Follow her @DreeTV

 
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