Last week something interesting happened to us at Braave. In an effort to spread the word about Braave partaking in AmazonSmile program, board member Atom Smasher posted the Smile link on The Atom Smasher Morning show page.
There was a comment here and there about supporting the organization, fighting for women with endometriosis, then a comment that sort of took me aback.
“…what exactly is the point of this organization? Is it just for women to whine and complain about their symptoms? If there is no cure – then what’s the point?”
At first, I’d be lying if I said I wasn’t a little thrown-off.
But, after I took a couple of breaths, I realized it was a fair question. People are wary of charities. And so, I made the best comment I could and hoped she’d understand where I was coming from.
Then, I came home, thought some more and figured it time to expand upon that comment.
Here’s the point of fighting, here’s the point of Braave.
Yes, she is right – there is no cure.
That absolutely doesn’t mean that we shouldn’t try to find one. Remember when AIDS was a death sentence? Cancer too? Not downplaying the severity of either one of those conditions, I’m just saying that because people didn’t give up on those diseases – someone found a better way to treat them.
The same could happen for endometriosis. We need to keep pushing though. Building audiences, raising awareness, raising funds to raise more awareness, then leverage those audiences again and again.
The world needs to fully understand what these women are going through and then the world needs to step up and help.
But the world won’t ever do that if we don’t help them see.
The more awareness we raise, the more attention the disease gets, but without education, it all falls flat.
We can reach people all day long, but if we don’t teach them, nothing will take hold.
If we can teach one husband, partner, father, mother, co-worker, just one person how to be a better care-taker or friend, then endometriosis management becomes a team effort instead of a lone wolf endometriosis battle.
Sure, it’s not a cure. But, there is a quality of life issue that needs addressed right now too. The more we can help these women build support systems who understand what they’re going through, the better care the support systems can provide.
If there is one thing I’ve learned about women with endometriosis, aside from the pain and the lethargy and everything else, it is the fact that most of them feel horrendously alone.
Because the disease is still widely misunderstood, most physicians think they are crazy. In fact, I had a specialist actually tell my wife that she needed to see a psychiatrist. He told her that nothing was wrong with her. He told her she was fine.
Also, husbands like me, do not understand and make mistakes (read that story here).
Then there are friends, family, heck – even other women bash on women, telling Endo Warriors to ‘suck it up’ stating that what they are experiencing is just a ‘bad period.’
Think about that for a minute. You have incredible pain dashing throughout your body. You’re tired. There is something terribly wrong with you, but no one believes you. They tell you it isn’t real.
That’s where community support comes in.
Sure, some complaining happens in our community. But, you know what? These women deserve to f’ing complain ALL DAY. Holy crap. I can’t imagine how hard it is to live like that day in and day out.
Mostly though, Braave and other endometriosis organizations provide a platform for women to share their experiences. To ask questions and get some guidance from other women enduring the same battle.
Spending the better part of 7 years in a Clinical Psychology environment, I saw first-hand the power of group chats. Seems corny to some, but there is power in understanding that you are not alone in this.
I can count at least two dozen women in the past 3 months that have messaged us and thanked us for that alone.
To me, that alone is worth fighting for.
Why We Fight Endo
The very fact that there is no cure is the very reason why we fight it!
We need to find one. That’s the point.
In the meantime, we’re going to do everything we can to educate physicians and partners, and support the women of the world battling endometriosis day in and day out.
But, like Arthur Ashe said, we have to start somewhere.
Maybe join us?
Toss your email in there below. We won’t ever abuse it. We’ll only send you articles like this and resources to help spread the word.