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The First Endometriosis Health Activist I Ever Knew: My Husband

The night after my first surgery for endometriosis, my then-fiancé wasn’t with me.

I was sick and in pain and scared, and he wasn’t with me! I was pretty steamed about this. I had never needed him more, and where was he?

Well, my beloved has the misfortune to be an actor. There’s no cure for that either. And at the time, he was playing Fred and Young Scrooge in a local production of A Christmas Carol. It was his first paid gig, and the show absolutely could not go on without him.

a christmas carol scrooge pocket sandwhich theater toby meeks

And I was really proud of him and all, but I couldn’t help but feel like my torso getting sliced open was kind of a bigger deal.

Now, don’t get me wrong. He was wonderful through everything. Even knowing that I’d be sick forever, he still wanted to marry me. And not only that, but he’d held my hand through every doctor visit, and still comes to the OBGYN with me to this day. He is amazing and supportive. And I really was thankful for all that. But laying on the couch in agonizing pain, it was really, really hard for me to feel grateful. I needed him by my side. I was panicking, I was in survival mode, and I was pretty sure my survival depended on him.

See, I was with my family, and while they are caring and loving, they are all very private about their health. Most people are, really, and at the time I was too. I definitely wasn’t comfortable actually talking about my uterus and ovaries and other girly bits to them. I was still blushing at the doctor’s office. I know lots of people hold fast to the idea of keeping people on a need to know basis, and only blog anonymously, and I totally understand that point of view. Out of all the invisible illness out there, I think endometriosis is one of the MOST awkward ones. Talking about any medical stuff is a social faux pas to begin with. Combine that with talk of menstruation (OH THE TABOO! HIDE THE CHILDREN!) and most people would actually rather crawl in a hole and die than be involved in a conversation about this.

oh hey mother nature monthly gift period

To me: comedic
To men: horrific

But you know who didn’t feel that way at all?

That guy up there, on the set, in front of a full house of audience members, a large crew, and an even larger cast.

That night, he pinned a small yellow ribbon on his chest. On every costume change. Fellow cast members asked him about it, the crew asked him about it, audience members asked him about it after the show.

And he would say my fiancée has endometriosis, and she had surgery today. He’d say it was a disease affecting women, that it had no cure, and I think he might have even mentioned the p-word.  He told people how much he loved me and how brave he thought I was.

He went out and raised awareness.

It took years for me to work up the courage to do the same, but I’m finally all caught up.

And I would like to say that if you’re still of the mind that we need to keep this health stuff private, just think how much easier it would have been if when you were first diagnosed, people had said “Oh I know what that is!” or “You too? I thought I was the only one!” imagine your teachers or employers accepting “I’m having a bad flare of endo” as if it was as normal as the flu – because it is! Everyone has a right to privacy, but don’t use that as an excuse not to reach out to someone. We all need awareness. No one should feel like a freak or be without treatment or a cure just because the general response is “I’ve never heard of that.”

176 million women have endometriosis.

Endo is one of the leading causes of infertility – it is the most treatable, yet the least treated.

1 in 2 people suffer from a chronic, invisible illness.

You are not alone, but I am sure you have felt alone. Let’s change that. Let’s all put our ribbons on our heart, whether we’re just going to the office or standing on a stage in front of a full house.

awareness ribbons yellow orange red ME endometriosis endo marfans marfan syndrome

“Secrets secrets are no fun unless you share with everyone!” ~everyone

Be sure to check out my husband’s health advocacy blog for himself – www.kwesting.wordpress.com!

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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.

15 responses to “The First Endometriosis Health Activist I Ever Knew: My Husband

  1. When I had my hysterectomy I was expecting the news of ovarian cancer (that is what they thought) and awaken to hear I had Stage IV endometriosis.

    • Well that must have been a relief! My doc told me it was endo early on, and he followed up with “it’s not cancer.” And I was like, okay. But then he kept saying “oh and don’t worry because it’s not cancer.” And it started to make me really paranoid haha.

  2. Oh and I am now following your husband as well. I look forward to reading his posts. From what you said in today’s post, he sounds like a keeper.

  3. mo

    I have also had surgery for endo and adhesions but have never discussed it on my blog. Why are we so sensitive with this subject? I’ll be writing about it soon. Thanks for giving me the push to write about it.
    mo

  4. THERE IS SOOOOOOOOO MUCH MORE THE DOCTORS KNOW NOW– THEN WHEN — I WAS TRYING TO HAVE A FAMILY & ALL THE TESTS & ALL THE SURGERIES–& &&&&& I WAS ABLE TO HAVE ONE CHILD–(A MIRACLE ) BUT NO MORE CHILDREN–AS YOU SAY— IT IS NOW A SUBJECT PEOPLE WILL TALK ABOUT– BUT- 40 PLUS YEARS AGO– NO — NOT IN MY ERA!! YOU NEVER KNEW SOMEONE ELSE WAS HAVING THE SAME PROBLEMS OR GOING THROUGH WHAT YOU WERE!!! THANKS FOR SHARING– & ENCOURAGEING THOSE THAT ARE YOUR AGE!! KEEP UP THE GOOD WORK!!

    • Thanks! Thank you for sharing too! It’s so important for people to not be alone. Even with his support it still took me years to talk about it, but better late than never! And I hope that blogs like yours and mine really do encourage people to speak out. 🙂

  5. Reblogged this on Connective Tissue Disorders: My Journey and commented:
    A wonderfully written post by one of my favorite bloggers!!

  6. Haha, too bad there’s no cure for acting. Still, what a guy. You’ve nabbed a good one, there 🙂

    And yes, it is great to see that endo is being more recognised – albeit slowly – as an invisible illness and of huge numbers of cases of female infertility. It should definitely be spoken about.

  7. Pingback: Newsround 1802. | Project: Endo

  8. Pingback: Let’s Give it up for my Man! | Do I Look Sick?

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