A friend of mine is in a position that I used to be in. We will call it the “hiding phase”. The hiding phase is where you are still not able to talk about your disease and you do a lot of work to hide it from everyone. There is embarrassment involved, feeling ashamed, being isolated.
Have you been there?
My friend Marisa has certainly had a difficult journey just like most of us here and up until lately she has been doing it alone. She tells me she would watch my videos and that I was able to say all the things that she felt, and that it made her feel less alone. When I heard that I did a little happy dance inside and my heart melted because I realized that what I came here to do has been accomplished. I wanted to be a voice for everyone else out there who wasn’t able to use their own because I needed that at one time in my life.
My hiding phase lasted almost 13 years. That was 13 years that I lived in silence. I didn’t even seek out people on the internet because I didn’t even want to talk to them.
What did they know?
They didn’t have it as bad as me!
They couldn’t possibly understand what I was going through.
Plus talking to people on the internet would mean that I was ready to admit that I had a disease, and that was the last thing I wanted to do. I knew I had it, but I didn’t want to talk to other people about it.
Of course there are the apparent things that I tried to hide. Maybe that has something to do with the master of hair, fashion, and make-up that I have become? I remember for instance, the first time I ventured out with my ileostomy. I didn’t get to do that much because usually I was in the hospital, but the first time I went out in public with my ostomy everything, EVERYTHING, became about hiding it. I was at my University working a table for a club that I was VP of. It was end of August, so very hot and sunny. There were hundreds of people everywhere and I found myself hyper-aware of everything. Looking at everyone as they passed by to make sure their eyes were not directed at my abdomen. I can still tell you to this day (4 years later) what I was wearing, a black tank top and some jean shorts. I chose black because I thought maybe that would conceal my secret better. As I waited in a line to grab some food for me and my friends I couldn’t stop looking down at my tummy where the bag had expanded with air. I was SURE that everyone knew what was under there and I immediately felt ashamed.
I can play that entire day back in my mind and remember it as if I were watching a movie. Life had now become…different. I was different than everybody there. They could enjoy their days and live carefree. Not me, no way! I had to worry about this bag on my stomach. They were having fun and really living life and I was consumed with thoughts of hiding my bag.
Those first few days out of the hospital I took my first shower at home which consisted of changing my bag, and then normal getting ready stuff which ended with me spraying my favorite perfume on. To this day I can no longer use that scent because all I think about is being sick and having that ostomy. It’s true, a simple smell takes me right back to being underweight, weak, and sick. I spray it and I am remided of my time with my ostomy.
Concealing my ostomy wasn’t my first experience in hiding. That came when I was a teenage girl who saw blood in her stool over and over again but wouldn’t tell her mom because she was too embarrassed. So she kept that secret until she got so worried that she finally said something.
My sixteen year old self went out on a date with her boyfriend and found herself in dire need of a bathroom on the car ride home. No way in hell was I going to tell my boyfriend that I felt like I was going to crap my pants so he better speed. Nope. I just sat there trying to keep an even face while chanting over and over in my head “HURRY, C’MON HURRY, HURRYYYYY”. Meanwhile I’m sure my knuckles were white from gripping the seat at my sides and sweat was pouring down my forehead. Not only was that mortifying enough but then I had to use the bathroom at his parents house and suffer the embarrassment of his family hearing me. This quickly taught me to not go anywhere in case this happened again.
I have taught myself to make secret plans to excuse myself to where I can use a bathroom away from other people. I have failed an entire semester of school because I would skip classes to have my dorm bathroom to myself. I have walked down to the lobby of hotels or other buildings to “get something” just so I didn’t have to use the bathroom in my own room where other people were. I have isolated myself to a point where I didn’t go anywhere because of the way my disease was taking over. As a college girl who should have been out having fun I was keeping myself at home because I had to use enemas at night. I learned to conceal acne from steroids, I have hid strange eating habits, accidents, side-effects of medications, etc. Who wants to talk about these embarrassing things with people? Imagine someone asking me what my plans were that night and I responded with “Oh you know, going home to fill my butt up with an enema and then try to keep it in for 8 hours while I sleep.”
So we hide.
It means we are not yet able to talk about it. We feel embarrassed. We isolate ourselves.
We are alone.
That last sentence doesn’t have to be there. We don’t have to do it alone! As I have been talking to my new friend Marisa she has reminded me so much of myself when I was where she is at, and she is doing the same things that I found changed my whole life. Recently Marisa participated in Get Your Guts in Gear where she met my friend Megan who you guys may know from thegreatbowelmovement.org and from my trip to Chicago. Megan is a part of my support family and now she is a part of Marisa’s, and now Marisa is a part of mine. Pretty awesome right?!
There is no right or wrong throughout this journey and there is no time frame for where you should be. We are not handed an Idiots Guide to IBD when we get diagnosed to tell us what we should feel and think and how to navigate life with this disease. Most of you will probably never be as open as I am about your disease, and that’s okay. Some of you will learn to accept it, some of you will never accept it. My hope for you is that you build yourself a support system so that you don’t have to do this alone. I hope that you do come to an acceptance at some point.
We are all at different stages. Some of us newly diagnosed, some long timers. Some of us are open and some are still hiding. Marisa told me that I gave her a voice when she couldn’t talk and recently she was able to express what she was feeling and is ready to share that with people. She is slowly gaining her own voice and I feel privileged to be a part of that. I wanted to post her words here on my blog so that she has a space to share her feelings. That will be part 2 to this post that I will share with you later today.
Remember, accepting your disease is different than liking your disease. You don’t have to like it to accept it. But you have to accept it to live this life the best that you can with a disease.