This post appeared on Newbie Ostomy.
At the 2015 United Ostomy Associations of America National Conference, I met a lot of people who were in different stages of acceptance and openness about their ostomy. In my opinion, there are three main types of ostomates when it comes to the level of publicity about their ostomy, but I’m sure there are grey areas between each main stage as well.
1. Out of the closet (and there’s no going back).
People who are out of the closet are totally open about their ostomy. They don’t hesitate to talk about (or show) their ostomy if it comes up in conversation with someone who doesn’t already know. And if they’re talking with people who do know about their ostomy, they’ll probably refer to it if it’s relevant.
2. Sort of in between.
There are a good number of ostomy bloggers writing about their ostomy adventures sharing their experiences publicly. Not all of them are completely out of the closet though; many of them keep their ostomy-related posts separate from their personal social media pages. Some of their friends are aware, mostly because they knew about the illness and were supporters throughout the journey. These people are choosy with regard to sharing their ostomy story.
3. In the closet (and not planning to leave).
This group lives a double-life. They only share their ostomy on a need-to-know-basis. Sometimes this means only significant others and doctors. In other cases, they choose only to share with immediate family and closest friends but no one else. Some hide it from their kids and many from their employers. These people might be a part of private online support groups or they may keep everything to themselves.
Being that we were at the UOAA conference, everyone was open about their ostomy. For some of the people who identify as being “in the closet” this environment was like a huge weight coming off their shoulders. The secret they’d been holding in was finally being shared and you could visibly see how much they enjoyed being able to talk openly about their struggles, questions and accomplishments.
I identify as being out of the closet. Before the conference, I hadn’t thought much about it. I did what was right for me and that was being open about my situation with whoever cared to ask. It meant that I didn’t have to hide things, I could say what was on my mind, I could contribute slightly awkward poop jokes to my friend’s conversations – I could just be me.
This rang especially true right after surgery because my ostomy was on my mind ALL OF THE TIME. It was all I thought about. I could feel it, sitting there attached to my abdomen. It was uncomfortable under my clothes as everything was healing. This surgery saved and gave me back my life, but I was so overwhelmed by going through what I was going through, that I didn’t know how to hide it. I cope by talking, and so I talked and talked to everyone who wanted to listen. Because this is how I dealt with it, it was hard for me to understand why (or more importantly, how) someone would choose any other way.
Being at the conference, meeting people who were in the closet completely or who ventured out but went back in was an eye-opening experience. I wanted to understand why and how they chose when to share or not share. After some really interesting conversations and a month of thinking about it on my own, I’ve identified another reason why I’m out of the closet. Being out of the closet helps people who are still in the closet (and others who are out of it as well).
I am proof that having an ostomy doesn’t have to hold you back, but if I kept that a secret, then no one would know and the stigmas persist.