When a Celebrity Has Your Illness

11:33 AM

(I'm writing this post with a very needy dog on my lap, so please stand by.)

Even if you're not a part of the World of Endo,™ you probably heard about Lena Dunham's uterus yesterday. In short, she's taking some time off of promoting her show, Girls to manage her endometriosis.

This isn't the first time she's talked about her experience with this disease. A few months ago, I had the privilege of being mentioned alongside her in an article by Prevention Magazine, following a blog post she made after her diagnosis.

She's also not the first famous woman to have endometriosis. But judging by reactions to her very personal and very vulnerable announcement, she's apparently the most polarizing. (Yes, it seems as though not even Hillary Clinton could be as polarizing as Lena Dunham...)

Before I launch on a rant about my feelings, let me be clear that I wholeheartedly love and appreciate what Lena is doing. I've really never taken much interest in her work, so I'm not going to pretend I'm some big fan of hers. But I am a big fan of talking openly about endometriosis and women's health in general. So my emotional venting has nothing to do with Lena.

It completely and 100 percent has to do with how we treat women and their illnesses.

So anyway, I'm going about my life this week and see that the disease I've been fighting for about 14 years is trending. You know, the one where I had to google my symptoms because I'd never, ever heard of it. YAY!

"What an excellent opportunity to raise awareness and share stories about women with endometriosis!" I thought. "It's so exciting that more people will know about it, and maybe more women won't be afraid to talk about it, and maybe we can encourage more research, and maybe there will be better treatment for people with debilitating symptoms, and maybe we'll find a cure, and maybe - ummm why aren't these Internet commenters as excited about this as I am?"

I should really take one of my own pieces of advice to heart. Never read the comment section. But I did because I'm a masochist, I guess.

Here's a nice preview of said comments that The Endo Challenge put together:

That's not to mention the slew of comments aimed at Lena herself. Like I said, she's polarizing. Apparently, a lot of people just straight-up hate her and can't have an ounce of sympathy for someone who has literally done nothing to them. But anyway, let's not get too far into that.

I read these comments, and I wasn't angry. More than anything, I just felt sad. Mostly sad for these pathetic people who I guess can't imagine anything happening to someone that doesn't happen to them. Maybe a little disgusted that these comments are just thinly veiled misogyny, like the one about taking care of families and not complaining. After all, women should be seen and not heard...

But I also felt very, very sad for the women reading these words. The women who, like I did, downplay their excruciating pain because they've been told to "suck it up" or that the pain is "all in their heads." Women who weren't ever taught in schools that life-altering period pain that causes you to pass out is NOT. NORMAL. EVER. Women who are too afraid to advocate for themselves and make their symptoms known because a condescending doctor has told them "nothing" is wrong.

It's words like this that keep women silent.

Being the loud-mouth that I am, I didn't really think about it. Until I tweeted out that image above and saw a reply to the effect of "This is why I don't talk about my endometriosis."

Why would you want to when people say things like "No one needs to know this"? It's why I briefly hesitated - and still sometimes do - before beginning this blog.

But how many other diseases out there do we do this to? No one ever tells someone with heart disease or diabetes to stop talking about it. And gosh, I can't turn on the TV without seeing an ad for erectile dysfunction medication - further supporting my theory that if endometriosis happened to men, we'd have a cure by now.

But just because it deals with *gasp* LADY BITS, we should all be very quiet and not let anyone know that women have uteri.

From now on, I'm using this gif every time I talk about "lady bits."

"Now, now, now, overreacting lady," you may say. "You are simply overreacting again. After all, as this wonderfully researched CNN article inferred, endometriosis is just a little period pain that's very easily treatable and curable! And it's not life-threatening at all!"

Sure, I probably won't die from endometriosis. (But eff you, CNN. It's not curable by hysterectomy or anything, and it isn't a walk in the park to treat either!) But do you know what diseases have very, very similar symptoms to endometriosis? Cancer. Gynecological cancers. 

Fine, don't give a crap about endometriosis. But if you're telling ladies to hush up about their painful symptoms and discouraging them from visiting a doctor when they just "need attention," you are putting lives in danger. When it's so critical to catch ovarian and cervical cancers early, we can't be mocking women who are being open and proactive about their health.

We need to talk more about diseases like endometriosis. No one should have to be in pain all of the time, even if they are a woman and clearly exaggerating their pain because that's how I certainly love to get attention, along with the other 176 million women worldwide who have this illness.

"Is that the girl with endo? Oh wait, no. It's Saturday, and she's at home with a heating pad..."
So thank God for the people like this woman on Femsplain and this woman on The Independent who chose to share their endometriosis stories this week. Who didn't let awful people get in the way of their conviction to speak up for themselves and for other women who have been silent for too long.

Please, I encourage you, endo sisters, to share your story, too. Even if it helps just one woman who isn't sure why she's in pain, you will have made a difference. Hey, even if you just informed someone who had never even heard of this disease, you made a difference. You can make a difference just by being a part of the discussion.

We didn't choose our illness. But we can choose what kind of dialogue we have about it. We can choose what we do with the cards that we are dealt.

Like Lena Dunham, I choose to keep sharing my story, regardless of what other people say.

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  1. great article. one only needs to do a side by side comparison of Endometriosis, Ovarian Cancer and Uterine Cancer symptoms to see how similar the symptoms are. Hoping all this press, raises awareness across the board for "women's health".

  2. Thank you for sharing and writing this.

  3. Thank you for sharing and writing this.


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