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The Poster Child for Endometriosis

Oh Marilyn. Is there anyone like you?

If you have endometriosis, probably one of the first rays of sunshine in your diagnosis was finding out that icon Marilyn Monroe had endometriosis too. That was probably both encouraging and tragic. On one hand, she’s basically a goddess. On the other, her life was rather tragic wasn’t it? But you’re not really sure.

No one is, actually. She lived in a time before social media and most of what we know about her we know from her movies, her quotes, and a few tattered news stories. Something about John F. Kennedy, right? And….she died because of pills, did she kill herself or…?

And when you’re researching her life with endometriosis, you’ll pretty much find nothing except that yeah, she had it. And she lived in a time when doctors knew basically nothing about it, so….what’s there to tell? We know she didn’t get proper treatment. We know she is infamous for popping pills. We know she tried so hard to have a baby but couldn’t. That’s about it.

She never really talked about it, and why would she? She was a sex symbol, a model, an actress. I don’t think there’s any way now for us to know the real Marilyn. We know her on screen. That’s not who she is, that’s who she plays. But God do we love who she plays.

In my research I found many scathing articles calling her the first famous bimbo, the girl who paved the way for Paris Hilton and Kim Kardashian to be trashy-famous. But I couldn’t disagree more. Maybe she wasn’t the most ground-breaking actress of all time, but she was precious. Lovable. She had endless grace, unforgettable charm, and a genuine sweetness about her. She behaved the way all girls wish we behaved – her character was a real-life Disney princess.

When you find out she had endo, immediately you forgive her for the pills and the drugged haze and the missed appointments. You no longer really judge her or think of her as a diva – that is, if you have endo or really know what it is. She had no treatment except pain pills, so she took them. Wouldn’t you? Don’t we now take what our doctors tell us to take? People still die all the time.

But of course, when someone is dead, it’s easy to idealize them as some kind of saint. Even easier when the deceased truly looks like a saint.

I recently saw the movie “My Week with Marylin.” Two things really stood out to me. First, she gives a little speech about why her relationships never work out.

All people ever see is Marilyn Monroe. As soon as they realize I’m not her, they run.”

Now, no one gets a chance to realize she’s “not her” I suppose. But that quote stuck with me. It spoke so deeply of invisible illness. I guess there’s not really degrees of invisibility, but if there were, Marylin Monroe would be the most invisibly ill person of all time.

The other thing that stood out was one particular scene. I want to go ahead and caution that it’s not for the faint-hearted, especially if you have endo. It isn’t graphic at all. In fact, it’s very understated. But I could barely watch. I have never seen a more honest depiction of endometriosis, and I don’t even think it was intentional.

In this scene, Marylin believes she is having a miscarriage when she wakes up in the night in intense pain. I can (should, and probably will) write a whole separate blog post on this. But the movie leaves the question of whether or not she was really pregnant unanswered. The main character guy asks the doctor if she really did miscarry and he refuses to disclose that information to anyone but Marylin and her husband – that excludes the audience as well. Not knowing what was really wrong leaves the door open for it to have been an endometriosis attack. And it’s so, so real. Like I said, I could barely watch.

There are all kinds of crazy stories out there about Marilyn and endo. Stories of ectopic pregnancies, notes attached to her belly begging her surgeons not to remove her reproductive organs. I don’t put much stock in these. We know she had endo, we know she had miscarriages, we know she badly wanted children. We want to know her. But I think she’s one of the most unknowable celebrities of all time.

What we really need is a poster child that speaks for themself. Someone to tell the world their own story of endometriosis. Someone well loved. I love Marilyn Monroe. Really, who doesn’t? I wish she had left some words of wisdom for the girls to come. But sadly for her and us and future generations, there just wasn’t enough information on it in her time. She probably wanted someone to be an endo role model for her.

I think it’s great to spread the word that Marilyn was an “endosister.” I think it’s awesome that we have such a beautiful face to put on endo. I just wish this fact had more to offer.

There’s this great musical called “Blood Brothers.” I actually read it before ever seeing visuals or hearing the music from it. I fell in love with the story, but the music is on another level completely. My favorite song from it is “Tell Me it’s Not True.” It’s one of those songs that just makes me pensive. For me, it’s about endo.

I think you’ll see why.

**************

P.S.: Hey readers! Want to help me give a sick little boy a little ray of sunshine this Christmas? If you have a chronic illness, ESPECIALLY if you have allergies, please consider writing a letter/card to this great kid. Email me at diehardguardgirl@yahoo.com for more info. If you know anyone else who could help, please pass the word along!

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About rachelmeeks

My name is Rachel Meeks. I have endometriosis, an incurable pain condition, IBS, a digestive illness, and PCOS, which causes irregular periods and infertility. After keeping my illnesses a secret, I started to get upset about how my fellow sick people were being mistreated because of ignorance. I knew that I'd need to stand up, make some noise, wear my heart on my sleeve, and admit that I am not well to make a difference.

7 responses to “The Poster Child for Endometriosis

  1. E. Milo

    Love Marilyn Monroe, love Blood Brothers (saw it twice on stage in Ireland). Hate endometriosis. X

  2. miche123

    I loved that movie, My Week with Marylyn. It was the best portrayal of her. Showed her as so much more than the idiotic cliche of a dumb blonde.

  3. Love your blog title and this post. Btw, I also have endo. I didn’t put it in my header, but was going to write on it in the About section (whenever I write that — it’s proving difficult — I have a LOT of autoimmune issues). I had four laparoscopies over approx. 20 years. I didn’t know Marilyn had it (I was diagnosed pre-Internet), so thank you for that. She WAS adorable and I disagree with whoever said she paved the way for the Kardashians. Ugh. Cannot think about Kardashians.

  4. Pingback: Afectadas Endometriosis Estatal

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