For The Endo Girls : Battling Shame

Often times, I think I'm shameless when it comes to endo.

I'm very upfront about having it. I don't embarrass easily when discussing it. I'm honest when people ask questions about it. And while I may spare them a few of the more gory details, I'm not ashamed of having it. And I'm not embarrassed to talk about it. Not at all.

But then pain happens. In front of people. Unexpectedly. And suddenly all the shame I thought I was incapable of feeling comes rushing over me and I would give anything in that moment to just disappear.



During bad flare-ups, I've been known to hide out. Turning down offers from friends and family to visit, letting them know I'm not feeling up to it that day. But the truth is... I don't think I'll ever feel up to it. I don't think I will ever be comfortable letting people see me in my most vulnerable condition. They've heard about what it's like and I've been really clear verbally about what I go through, but seeing it in person is completely different.

On the last day of our Tahoe trip, I started having some pain. Nothing out of the ordinary and I assumed it had been brought on by a small hike we did, down to the waterside. It continued the next day as well, getting progressively worse. On Wednesday morning I knew I shouldn't go in to work. There was way too much pain but my biggest concern was that my coworkers might think I was faking it.

"Oh, so she feels well enough to go on a trip, but conveniently, 

when she comes back to work suddenly she has pain again?" I imagined them saying. 

Assuming I could get through the day, mind over matter, I walked into the school. I held it together for two long hours - silently clutching my stomach when the flashes of pain would get too intense and letting my eyes brim with tears when no one was looking. When it was time to take my break, instead of sitting in the staff lounge, I walked slowly into the empty workroom, sat in the corner, curled up over my knees, and tried to breathe. And then I started to cry. And then I realized I wasn't going to be able to do this. And then I got scared because I realized I was too late to leave work with my dignity intact. The shaking started and my body started breaking out in the red rash that comes over me when I feel extreme pain. I kept my head down and tried to quiet my sobbing and then I heard the door open. One of my coworkers saw me, ran to get the director, and then they both came back. "Get her mom on the phone" "Do you have medicine you can take?" "Do you need a ride home?" "Let them know we need a sub this afternoon." 

It was all such a blur through the blinding pain.

"Please, God" I prayed, "Let me vanish. Please just let me dissolve into the air like this never happened."

But they saw it all. They saw me gasping and moaning. They saw me unable to walk by myself. They watched me get escorted out to my mother's car so that she could drive her 24 year old daughter home from work. They saw me in my most pathetic and miserable state.

And it wasn't the first time something like this has happened.
But every time, I'm humiliated.


The rest of the night and for three days since, I've had nothing to do but lie in bed and relive that experience.
Feeling that same embarrassment wash over me continuously.

But here is what I need to remember and what I hope you will remember 

if/when you have a similar situation.

1. My health needs to come first. Before the opinions of others, before my pride - first.

2. Endo is not my fault. It is out of my control and so far, there has been nothing I can do to stop it's dictatorship over my body.

3. I do as much as I can, the best I can.

4. People who doubt or gossip don't matter, because they are wrong. Don't let them have any impact on decisions you make.

5. I believe we are created in God's image, and for some reason beyond my current understanding, this is His plan for my life. And even on my darkest days, His plan for me is not something I should be ashamed of.


So with that in mind, here's how I'm trying to recycle my shame into a more positive feeling.
What if every embarrassing breakdown was a teachable moment for someone else?

What if seeing it is what some people need in order to take it seriously?
What if this is the raw example that will help them fully know what we go through?
Maybe seeing it in person will release someone's doubt.
Maybe words aren't enough and in these unfiltered moments, someone is understanding us a little bit better.

And maybe that's a longshot. But it's what I'm hoping.

In the past, people who have accidentally seen me at my worst have reacted a variety of ways in the moment. But more often than not, they've come to me later and said "I had no idea." And in the midst of my anger and frustration and embarrassment, I find thankfulness in that.

Do you get embarrassed when people see you during a flare up?
How do you battle any shame you might feel?

Hoping this holiday season finds you feeling well, happy, and surrounded by love.
xo