The problem with celebrities sharing their endometriosis diagnosis…
Announcing to her 5,100,000 followers on Instagram, Bindi Irwin opens up about her 10+ year silent struggle with endometriosis. Posting a lengthy caption accompanied with a picture of Bindi in a hospital bed, anyone without pervious exposure to endometriosis would think her surgery was the end of her journey. And as I’m sure you know (especially if you’re like me and still very much have pain and symptoms post- excision) that is the farthest thing from the truth.
Along with Bindi’s own posts on social media she was interviewed by major publications like People magazine. In which People magazine didn’t even get the definition of endometriosis correct. The article ends with a quote from Bindi talking about how happy she is because she’s finally out of so much pain. I cringe reading that. Not because I’m not happy for her or don’t want that outcome for her. But it’s literally the last sentence in the article, gotta have a happy ending for the sweet and loved reality TV star. I so wish that was how it went. One surgery and you get your life back from this vicious disease. But let me remind you this is very inaccurate, in many ways.
The endometriosis community always gets so excited when we see mainstream media covering an endometriosis story. However, I’ve come to realize that it often ends up doing more harm than good. It gives fuel to the fires of “See, so-and-so had it and it’s not that bad.” and “Isn’t that just a bad period?”. It also negates the fact that endometriosis is a whole body, progressive disease WITHOUT a cure. Not only do the celebrity stories often site misinformation, they never speak to the obstacles that stand in the way of non- celebrity patients.
The type of surgery Bindi Irwin had, excision surgery, is extremely difficult to access as it is expensive and often not covered by insurance. In addition there aren’t very many surgeons that perform this type of surgery. In fact, non- celebrity patients are typically offered a less expensive and ineffective surgery called ablation.
In other recent news Whoopi Goldberg made some very ridiculous comments about endometriosis on The View. Even after calls from the endometriosis community online to redact her comments it still shows in Google’s top results…
“And I was lucky enough because I had a urinary tract infection that I did not take care of,” Goldberg, 67, explained, describing the symptoms that led to a more serious diagnosis. “And I was lucky enough to get to somebody who said, 'This is called endometriosis,' and they were able to treat me with antibiotics. Nov 10, 2023 Yahoo! News
To make it clear endometriosis is NOT caused by bacteria and is NOT treated by antibiotics. But it didn’t stop publication after publication from repeating Goldberg’s quote without fact checking it first. This is where celebrities sharing their endometriosis journeys becomes more problematic than beneficial!
They have huge platforms and their audiences believe the words they say and products they share. But when they take to their various stages to share about endometriosis and don’t get it right there’s no repercussions for them. The damage is done and the online endo community works tirelessly to undo the harm. But the platforms are so unevenly skewed that the efforts feel like a drop in the bucket. The same publications that will cover endometriosis incorrectly when it’s impacting a celebrity won’t do the same for the millions of non- celebrities living without access to care.
Thankfully the endo community doesn’t back down easily and some of the experts did their best to correct this bacteria theory. There’s a great article from the doctors at Center for Endometriosis Care in Atlanta, Georgia. You can read that here.
So while yes, the eyes and awareness celebrity endometriosis stories receive is great and could be helpful. In reality when it’s marked with inaccurate information and blanket statements that make it seem like it’s so easy to get over it’s by no means helpful. I’m not even sure if harm is the right word to use. It seems like the negative impact is greater than what the word “harm” conveys. The fact of the matter is that it sets us back, not just the endo community but all those still fighting for a diagnosis, for proper care, to be believed. It trickles down generations and impacts those that haven’t even begun their journey yet.
It’s been decades since endometriosis first appeared in medical literature and disturbingly enough not much has changed! This disease is so misunderstood and that misunderstanding is life threatening. That’s what these celebrities stories leave out!
*Important to mention that everyone experiences endometriosis pain and symptoms differently. For some excision surgery does relieve most to all of their symptoms. While others may not see much relief, attributed to many factors. But the fact remains endometriosis is an incurable and whole body disease that doesn’t simply go away after one excision surgery. If you have questions about endometriosis or are looking for reliable resources make sure to check out our Resources tab. As well as The Clubhouse, our virtual endo community, that has a growing library of articles, tips and support for all things living with endometriosis.
*Reminder that nothing on this site is meant to be taken as medical advice and you should always discuss with your personal physician.