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.
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.
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.
“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!