Could the online Endo Community be on to something?


Manage episode 341185783 series 3123487
על ידי Best Worst Club התגלה על ידי Player FM והקהילה שלנו - זכויות היוצרים שמורות למפרסם, לא ל-Player FM, והשמע מוזרם ישירות מהשרתים שלכם. הירשמו כדי לעקוב אחר עדכונים ב-Player FM, או הדביקו את כתובת העדכונים באפליקציות פודקאסט אחרות.

The Best Worst Club- it's the club no one wants to be apart of with some of the best kind of people.

From learning the correct definition of endometriosis to how it presents and what questions to ask my doctor, it was all because of the online Endo Community. The cyber endo- warriors work endlessly to correct misinformation and arm warriors with the proper resources needed to navigate the systemic obstacles in our medical system and society. On average it takes 7- 10 years to receive an endometriosis diagnosis and that is not for lack of effort on the warrior's part. This endo statistic is one of the most frequently touted facts because it is disgustingly true and shocking, honestly it's a complete injustice.

But what that statement doesn't cover is what it's actually like to live for at least a decade in a body that is being ravaged by a disease with no name. It doesn't explain the strength and self- advocacy it takes to be a patient in a medical system that chooses to dismiss this debilitating disease. And it can't begin to touch on the trauma of being gaslit over and over... and over again.

I often find myself saying "How can this be real?" and "I feel like I'm living in a conspiracy against endometriosis warriors.". Because once you've lived it, once you've done a little digging, the systemic problems become glaringly obvious and my activist- heart can't know these things and not attempt to do something.

It's mind blowing to me how integral of a part us warriors, the one's suffering with this disease, play in helping each other navigate the gauntlet that is endometriosis. I know that the online endo- community helped me when no doctor could diagnosis me. They helped me avoid ineffective treatments and inadequate doctors which could've made me worse. In a lot of ways I beat many endometriosis statistics because of this community, our community.

I hope that by sharing our raw and real realities it will break stigmas, dismantle misinformation and call out the systemic injustices we face. That the Best Worst Club can be an extension of the incredible work all the endo- warriors ahead of made have done.

Whether you've never heard of endometriosis, are in the grueling process of getting diagnosed or in the stages of trying to manage it there will be an episode for all of that. Because before any true change can happen the awareness that there is a problem in need of attention has to take place first!

Hit that "Subscribe" button and listen along with the nearly 200 million of us that are living with endometriosis.

Hosted by Mariah Battaglia- Come say Hi, join the Club and our private group chat on Instagram here @EndoDoula
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Disclaimer- Some episodes may contain topics or personal experiences that could be triggering to some and are of mature nature. Please listen at your own discretion and remember that this podcast is never meant to be taken as medical advice. Please listen at your own discretion and remember this podcast is never meant to be taken as medical advice.

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