Saturday, December 6, 2014

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.


  1. I am so sorry this happened. I can sympathize. I hid it for years as I work in a very competitive, male dominated industry and did not want anyone to know what I had going on. I went so far as to make sure my home was a block away from my office so I could just slip out when things got unbearable. I would go home, cry or lay on the floor or be violently ill, then clean myself up and go back to the office and pretend nothing ever happened. I kept this up until I needed multiple surgeries and couldn't hide it anymore. My male managers and colleagues were surprisingly sympathetic and understanding. It was a huge relief. It is still so hard to have a few good days, then have a bad flare up. It still makes me feel that people don't take me seriously, especially when I get comments like "but you look good, you look healthy!" or "but didn't your surgery make you better? You were fine yesterday". I felt great yesterday and tonight I am on the couch with a heating pad. This disease is awful and frustrating, but just know that there are lots of us out there that completely understand. We have nothing to be ashamed of and if anyone wants to judge us, that is their problem. Take care of yourself!

    1. Wow, that sounds awful. But what a blessing to have had understanding coworkers - especially in a male dominated industry! The "you were fine yesterday" comment is always so hard to hear. When people ask how I'm doing, I usually say "just taking it by the hour!" because typically, that's what we have to do! Things can change SO quickly. We've gotta just keep rolling with the punches and advocating for ourselves. Thank you for your comment! Hope you're feeling well today!

  2. I have been in that position! I had surgery in May and recently my pain has come back pretty strong. I was so embarrassed and ashamed when I called into work (even though it's a seasonal gig because I'm in nursing school full time), which is so silly! A few days later my boyfriend and I went to an engagement party and I knew it was coming just from how I started feeling. I knew within an hour or two I was going to be on the floor if I didn't get home and get medicine. I had tears welling up the whole time, I was so embarrassed! When we got back to my house, I excused myself and lost it in my room and waited until I could compose myself before I went to watch TV with him. Why are we so ashamed!? I talk openly about it but I HATE people seeing me at that point.

    1. I have no idea where the shame comes from. But we aren't alone in it! I'm hoping that the more we talk about it and the more awareness is raised, the less shame we will feel. We are strong! We deserve to feel strong and to be seen as strong, even in our moments of pain! The other day during my flare up someone told me, "Everyone has their weaknesses" which I know is true, and I've got more than a few of my own, but those moments? That's not weakness, that's strength! And the sooner I get that through my own head, the sooner other people may understand it too. :) Thank you for reading, sister! xo

  3. I also get really embarrassed. I get embarrassed that I can't go and do the things I want to with my friends and family. No one around me understands endo. During a really bad flare up my mom wanted me to come stay with her and my siblings for a few days. I told her I could, but basically all I'd be doing is laying in bed or on the couch. She said "it's okay, we all just really want to see you!" So I stayed with her. The whole time she kept planning all these outings like hiking and a brunch meeting. I tried to explain to her how I was feeling and she made me feel like I was acting like a little brat. It was humiliating. I hate the way the people look at me and treat me. I hate that people don't understand it. They say stuff like, "Oh you're still having pain from that?" like it's something that'll go away one day.
    I could seriously go on for hours! It's amazing for me to be able to read things online like this. It helps to know I'm not alone in this battle and that others understand what I'm going through. So thank you, as always, for sharing! I hope your pain has come down since that episode and that you're doing better! I wish you the best of luck!

    -Also, I was wondering about the red rash you mentioned. I get these blotchy red rashes all over my body that are hot to the touch. I've never been able to figure out what they're from. I never thought it could be related to my pain?

    1. I always get blotchy and red when I'm having a bad flare, although it comes and goes throughout. You should look into it and see if your rash correlates with your pain! Could totally be a possibility. I also break out in heat rashes after a few days because of constant heating pad use and baths, and aloe helps with those. Best of luck to you! I hope one day your family is able to understand how much you push through! You're one tough lady! Keep it up!

    2. Mine gets worse with using my heating pad/taking hot baths too! I'm definitely going to need to look more into it! Thanks for your words of encouragement! You seriously have no idea how much it means to me! Good luck to you!

  4. I just found your blog while searching endo topics on Pinterest and this post is perfect! I just had a flare up Monday at work and it was awful! I get a fever and was shake and a whole list of other symptoms ... I find an empty office to sit and hide in. This week it was so bad I had to be driven home from work as well. So sorry to hear about your pain but its nice to read about people having experiences so similar to mine. It can be such a depressing pain to deal with because no one understands and I personally feel very alone with it. I think the feeling of shame does come from that and the fact that I do call in to work a lot of times because of it and people at my work assume I'm just playing hooky or something. Best of luck with your pain and again, thank you so much for sharing! This was a much needed find for me this week.

  5. I remember one of the very first times i had a flare up. we were in a special church temple. and i had not been feeling well prior but it was my sisters first time so I went anyway. During the middle I leaned over and whispered to my mom. My stomach hurts so so bad mom. She said maybe its just gas just try to silently burp or let out some gas. hahaha I said no it's not like that I think I am going to puke. well I had to jump up in the middle and run to the bathroom. I didn't know till later but they stopped the whole ceremony and a woman came to the bathroom to ask if I was coming back in! So mortifying. I love your words about God. I also believe that Christ suffered not only for our sins but our mortal pain. He knows how we are feeling. And he is with you and I and everyone. We will have perfect bodies one day and not live in pain. Thanks again for your blog. I know you have tried natural alternatives have you tried any essential oils? I started almost a year ago regularly adding them into my daily routine. It hasn't 'cured' me but I do notice a difference. If you want any samples of the regimen I use I am happy to send some your way.

  6. I found out that I had endo in July. Sometimes I wonder why did this happen to me. Why do I have this horrible illness? I often to have felt shame because I have had to call into work because of severe cramps. My coworkers didn't really understand until I came to work and the cramps got worse. I remember one time my blood pressure dropped really low. My face got really pale. One of my coworkers rushed to my side and got my husband.

    Kelle, since finding out I have been going through and reading all your blogs about endo. I am so glad that you opened up and wrote your story. Thank you so much for sharing!!!😀😀😀