‘CEO Of Your Own Body’: Tanika Gray Valbrun Of The White Dress Project Talks Fibroid Awareness Work

A decade ago, CNN content producer Tanika Gray Valbrun found herself at a crossroads: She’d spent her professional career telling other peoples’ stories but had not been able to figure out, much less tell, her own story.

At age 15, she started experiencing heavy periods, bloating, frequent urination and other symptoms of uterine fibroids – something her mother had also experienced. Despite having the symptoms and family history, she assumed that everything she was experiencing was normal.

“We never really talked about it,” she said. “Instead, I was focused on how to protect myself so I don’t have an accident or how frequently to take Advil so the pain was bearable; everything around my period was just about management.”

Growing up, she was focused on getting a good education and becoming a journalist so she could tell people’s stories. As she worked toward her career, she put her health concerns on the back burner and the additional steps she had to take to make it through each day became second nature.

“All of these things just became my lifestyle: I could never wear white, I had to learn how to line my underwear, knowing when to take medicine to help manage it,” she said. “I never really investigated how it was impacting my quality of life.”

The first time she brought her concerns to her doctor was when she was after she fainted while moving into her freshman in college. At the time, her doctors recommended she undergo a blood transfusion for her low iron levels and a dilation and curettage (D&C) procedure to remove biological material from her uterus.

“It was super-weird for my mom and I because this procedure is usually used in abortion or after a pregnancy loss and, in hindsight, a D&C was not the right treatment,” she said. “But I was a college student and felt like I didn’t have time to worry about what was going on with my period, so I just went on living life.”

She went through four blood transfusions and by the time she hit her late 20s she said she was frustrated with not having a clear diagnosis about what was going on with her body. At one point, she saw a doctor about her fibroids and they told her that if the fibroids weren’t bothering her the doctor wasn’t worried about it.

“If a doctor says they’re not worried about it, that means I don’t have to be worried about it,” she added. “I didn’t connect the heavy bleeding and the pain and the anemia to the fibroids, so I just kept putting off doing anything about it for three or four years.”

After getting married at age 34, Valbrun started thinking about starting a family. When she went to her doctor, they told her she would be better off getting a surrogate instead of carrying her own pregnancy, because her uterus was too compromised from the fibroids. They even suggested getting a hysterectomy.

“It all hit me, like what the hell,” she said. “How could this go from three years ago if it’s nothing bothering me don’t bother them to now needing a hysterectomy. It was a very devastating and trying time.”

A second opinion from a different doctor a month later led to a surgery to remove 27 fibroids from her uterus.  During her recovery from the surgery, she found herself reflecting on her life and what was to come.

“When I was a child and was feeling overwhelmed, I’d go hide in my closet,” she said. “So during my recovery, I felt this urge to go into my closet and I started looking around and realizing that, despite being a ‘girly girl’ with lots of clothes, I had nothing white in my closet. It hit me that I had never worn white because I was afraid of having an accident.” Thus, The White Dress Project was born.

Leaning on her storytelling skills, Valbrun started sharing her experience with people and built up a community of folks who connected with her vulnerability and authenticity.

“I think the authenticity really started a movement,” she shared. “It has revolutionized the way we talk about health, because for so long it was taboo.

The White Dress Project was created to spread awareness about uterine fibroids through education, research and community building. The Project celebrated its 10 year anniversary this summer at a gathering in Washington D.C. Looking forward, the advocate said she’s hopeful the community continues to grow and spread awareness. Personally, she’s looking forward to having the opportunity to be a mom.

Her advice to women navigating the medical system: become your own advocate.

“You have to learn to advocate for yourself, join communities where you can learn what questions to ask and bring people with you to doctor’s appointments who can listen and take notes,” she said. “You are the CEO of your own body.”

For more information on Tanika Gray Valbrun and The White Dress Project, follow on social media @WeCanWearWhite or visit the website.