July is Fibroid Awareness Month, but only in few states across the country. It’s not national awareness month because there aren’t enough people talking about it! But Tanika Gray Valbrun, founder of our partner The White Dress Project, is fighting to change things. And her battle started before she was even born. I sat down with her to learn more about her story.
How and when did you find out you had fibroids?
I found out I had fibroids in my early 20s, after a doctor recommended a procedure to remedy my abnormal uterine bleeding. I was blessed to be aware of what fibroids were and their symptoms, so when I found out the cause of my heavy bleeding was due to fibroids, I was disappointed, but not surprised.
What did you know about fibroids before you found out you had them?
I was very familiar with fibroids because I was fortunate to have a mother who shared with me her health experiences. My mother lost two sets of twins to fibroids; a set before me and a set after me. I was her miracle baby. She was transparent, sharing every part of her journey. So when I began to experience the same issues, it was not as foreign to me.
Because of these experiences, my mother and I share a common bond. Her story is my story. She lost four children but I also lost four siblings. It’s that interconnectedness that has taught me that all of our stories are connected. My mom gave me the courage to be imperfect and demonstrated how important it is to get rid of the shame associated with fibroids. Even though this was familiar to me, I recognize that there are many women who suffer with this epidemic and don’t have someone to share their journey. Many times they are left in the dark, thinking the symptoms of fibroids are normal.
How have fibroids affected your life?
Fibroids have affected all aspects of my life, and spiritually, caused me to question my faith and fertility. The physical effects have been jarring; bloating belly, severe anemia leading to multiple blood transfusions, severe pain.
The emotional effects have left scars. It’s emotionally draining when no amount of exercise will bring your belly down. Or people ask you about your baby’s due date and you’re not pregnant, but want desperately to carry and deliver a child. That creates all sorts of self-esteem issues I internalized. I developed an anxiety disorder about messing up car seats and mattresses or standing up from a business meeting and feeling the tell-tale gush, that meant I’d need to run to the bathroom and take an early lunch break to hit the drugstore to buy a new pair of underwear.
Fibroids affected my mind, body and soul.
Many women have fibroids, but they don’t all start nonprofits to raise awareness about the condition. You did. Why and why did you name it the White Dress Project?
This fight is personal for me. When I got married in 2012, I started to weigh my options for starting a family. I visited a doctor who eventually told me we would need to save our money to get a surrogate because I would not be able to carry a baby because my uterus was so compromised with these growths. I was devastated. A month later, I got a second opinion and found a doctor who agreed that my fertility was a priority and that being a mother was not impossible.
I chartered The White Dress Project one year after undergoing a myomectomy (a surgical procedure to remove uterine fibroids) in July 2013, where I had 27 fibroids removed in an emergency surgery. I definitely was that woman who suffered with fibroids for many years but never spoke about it. I just dealt with it. After having my surgery, I knew I had to do something to 1) get our legislators to understand that this is a national issue and we need to have federal support. 2) create a community of women who were educated about the disease and felt comfortable sharing their stories and not feeling as if they had to suffer in silence with this epidemic. And 3) raise dollars to fund the research this issue needs and support the campaigns and programs to make this a domestic and international women’s health concern.
During my recovery, I said to myself, “why are there no walks, funds being raised, legislation,” etc. In addition to that, I walked into my closet and realized I didn’t have any WHITE. Now while this may seem simple and definitely a #firstworldproblem, it signified to me how much I sacrificed my quality of life and would always be so uncomfortable wearing white. At that moment, the name, The White Dress Project came to me. Our organization has taken a fashion emblem—the white dress—and has made it a symbol of empowerment and hope for women with fibroids. For many, a white dress may simply be something sexy to wear. For us, it signifies more. It says, We all can wear white. Fibroids will not leave us hopeless. This epidemic will not get the best of us.
What is one thing about fibroids you wish every woman knew?
I want to tell women lots of things about fibroids. You’re not alone. You have options. Get a second opinion. But one of the most important things is, think about family planning early so that you can make a plan. A plan which may include traditional methods, egg freezing, artificial insemination or in vitro fertilization. Fibroids can completely alter your original plans and sometimes post-surgery pregnancy can be harder. Also, get professional help to deal with the mental effects of fibroids. Dealing with this epidemic can often be mentally draining. It’s emotionally freeing to know you’re not alone or the only one worried about staining the mattress. Having a community of women going through same thing as me keeps me afloat and helps me manage the emotional pain associated with fibroids.
Why is making Fibroids Awareness Month national so important?
Fibroids Awareness Month nationally is so important because THE STATISTICS ARE STAGGERING!
- 80% of women will have fibroids by age 50
- Black women are three times more likely to have fibroids than white women
- Black women have more, and larger, fibroids and more complications with myomectomies.
- Fibroids can cause infertility
- Fibroids cause more than 200,000 hysterectomies each year, more than any other cause for the surgery
Despite these statistics and many others, little is known about fibroids and how to prevent them, especially in Black women.
A national Fibroids Awareness Month is important to give the millions of women suffering with the reproductive issue a voice and to serve as a platform to demand lawmakers deem all of our reproductive health concerns important enough to invest dollars in, debate about and offer support for.
It’s also important to have this national awareness month so women dealing with fibroids can see they have support from other women and men, too.
What can women, and men, do to help make Fibroids Awareness Month a national observance?