Announcing the Braave Endometriosis Partner Support Group. Below is the story behind what it is and why we’ve started it, but if you’re not one for stories, go here to request to join the group. It’s a secret Facebook group, meaning no one can see what you’ve posted or even that you’ve joined. For more explanation on that decision, read below.
Endometriosis is hell.
And I don’t just mean hell in the traditional sense of the word. I don’t just mean that it’s painful and debilitating or chronic, or incurable.
It’s hell for all those reasons, for sure.
But, there’s an extra layer of hell that you don’t really understand until you dive a little deeper inside the head of woman with endometriosis.
The Loneliest Disease
I didn’t quite understand this until I helped launch Braave and spent countless hours behind the keyboard chatting with hundreds of different women with this disease.
Didn’t understand it because, one, I was a terrible endometriosis partner and two, well…
…it’s mostly because I was a terrible endometriosis partner.
But, also because I have just never walked in those shoes. The shoes where everyone tells you that you’re crazy. The shoes where everyone tells you that what you are experiencing isn’t real and that you should just suck it up.
I’ve never been to a trusted physician with a problem and had him look me in the eye and tell me that I needed to see a psychiatrist because there isn’t anything wrong with me.
I’ve never felt that alone.
I’ve never felt that un-supported and lost.
That’s how every woman with endometriosis feels though. Even the women who are lucky enough to have great support from day one – at some point during her battle – she has felt alone fighting this disease.
Braave’s 360 Degree Model of Endometriosis Support
When Braave Founder Shawnda McNeal approached me about the idea of launching an organization to support women with endometriosis, she really focused on the word support.
Sure, we focus on raising awareness by leveraging your bravery in telling your endometriosis battle stories. We get dozens of emails per week from women telling us how helpful those stories are in helping them and their partners understand endometriosis. Men and partners too. They’ve stepped up bigtime to share.
Plus – HELL YES we need a cure.
But, even when there is a cure, there will still be women being diagnosed with this disease. Those women will need to be supported both physically and mentally.
That’s where Braave will exist. That’s what our 360 model of endometriosis support is all about.
Support for the woman with endometriosis, but also support for everyone around her. The stronger her partners are, the more educated they are, the more unified the fight against this disease becomes.
With a more unified front…she will get stronger…
…she’ll feel less alone
…she’ll feel less crazy
…she may not feel as guilty for only having a spoon or two left at mid-day because you’ll have her back and make her feel like it’s ok.
And she might, just might have an extra better day or two.
A Support Group For Endometriosis Partners
First, I should say that I recognize that we’re not the first endometriosis support group of this kind. There are some great groups out there like Mendo Warriors.
What I haven’t found though is a group that matches the Braave support model. A support model that includes more than men and extends to everyone in touch with this disease.
Man-woman, same-sex, sisters, brothers, moms, friends, grandparents, co-workers.
Sure, I’m a little naive, maybe zero co-workers will join…but maybe a couple will? And maybe we share something that helps them understand what their colleague is battling each day in the office.
With this all in mind, I’ve launched the Braave Endometriosis Partner Support Group on Facebook.
It’s a secret group too, meaning only people in the group know you’re in the group. Like an Endometriosis Fight Club where only the Endo-Partners show up.
I struggled with making that decision because I’m not a secret kind of guy, but in real-life, therapy sessions aren’t public…so why should this be? I really wanted you to feel safe to share…
So, join me? Go here to request to join the group.
One Last Thing
If you decide to join, can I ask you a favor?
After you’re approved, please do a post to introduce yourself. Even if there aren’t many people in the group yet.
And, please, when you’re ready, share your perspective.
The more we all share the stronger and more educated we’ll all be.