Each March, millions worldwide observe Endometriosis Awareness Month in recognition of the estimated 176 million women suffering from the disease. But how and where did it all begin? For those answers and more, The Blossom did a little digging, and that led us to the founding mother of Endometriosis Awareness Month herself, Mary Lou Ballweg, president, executive director and founder of The Endometriosis Association.
Birth of a New Movement...in Milwaukee
Back in 1993, Mary Lou Ballweg says she was one of eight women who founded an Endometriosis Awareness Week during The Endometriosis Association's roundtable in Milwaukee. Those eight founders soon grew to 22, and shortly after that, recalls Ballweg, the designated week took on a new life of its own. "We could not do everything all around the world in just a week, so we expanded it to a month," Ballweg tells The Blossom. The idea stuck. Today, she adds, "activities are carried on all over the world.” When asked how many people work for the association today, Ballweg states, “I cannot even tell you, there are so many people. We are in endo awareness month right now, so every day we are just swamped with requests for stickers, ribbons, and brochures. As they say, every generation builds on the shoulders of the generation before it. So it is very exciting to see a lot of things happening.”
Why the Yellow Ribbon?
Yellow is universally known to be the color for endometriosis awareness, but why? “Yellow was the color already established as the color for endometriosis starting in 1980, with the publishing of our first popular yellow brochure,” Ballweg explains. “Because it was yellow, written in so many languages, and went everywhere in the world, that just became the color of endometriosis.” Ballweg says she is also behind the ubiquitousness of that symbolic ribbon. “I felt that a plain ribbon that did not say anything, especially back in 1993, it did not mean anything. It had to say something about endometriosis. So we put the wording on it, ‘Ask me about endometriosis’ and felt that, in elevators, offices, and in walking around people will go, 'Oh, what is it?' It is an awareness tool.”
It turns out the milder climes of March had lots to do with the timing of awareness month. “I tried to choose a time when hopefully most of the world would not be in the depths of either winter or severe summer, and I just thought that March seemed like a good month in between those two major climate issues." There was also the issue of separating the awareness time from other big events. Ballweg notes: “Fall was a more difficult time because that is major, major fundraising time.”
Strength in Numbers
Endo was a far more taboo topic just a few decades ago than it is now, and Ballweg says she and her colleagues had to fight hard against ambivalence and ignorance. "Back in those days, nobody cared. It was hard to get attention, and it was considered unimportant to read about, and women were creating a 'mountain out of a molehill,' which is what one prominent doctor said to me.” So Ballweg and her colleagues took matters into their own hands. “We started the world’s first research registry, built it to over 8,000 case histories, and ended up publishing out of that, first with the medical college of Wisconsin and then with the National Institute of Health (NIH). Once we published with the NIH, no one argued with us. We built awareness based on science that showed the disease was much more serious and showed a lot more culpabilities," she shares.
A Social Media Campaign, Before Social Media
Long before Facebook, Instagram, Twitter and Snapchat were even a thing, Ballweg and her team of trailblazers successfully spread the endo-word the old-fashioned way. "Even before 1992 we had some major, major awareness campaigns," she recalls. "We had a multi-million dollar campaign in 1987, during which we had full page advertisements from Time magazine, we had national publications, and at that point, we were receiving over 2,800 calls, So every awareness campaign I see now is really building." Ballweg says she sees how the younger endo generations have used social media as a tool to spread the word, and she approves. “We have to get out of the closet. It is nothing to be ashamed of. We did not bring this on ourselves. So let’s tell the world so we can change it, get better funding for research, and hopefully healthy families in the future.”