At the UOAA National Conference, I met a lot of people who were in different stages of acceptance of 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 a person engages in, but I’m sure there are grey areas between each main stage as well.
Out of the Closet (And There’s No Going Back)
People who are out of the closet are totally open about their ostomy. They are open with their friends, families and strangers about their situation. They don’t hesitate to share about 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 might refer to it if it’s relevant. Some of these people may let their ostomy be visible in public at the beach or modeling in a fitness competition, but do tend to conceal their bag from sight in most instances.
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. They might post about having an ostomy on their personal social media pages every once in a while, but it’s not an every day thing. Some of their friends probably know, mostly because they saw them when they were suffering and were friends throughout the journey. These people are choosy about who they share their experiences with. In conversation with people who do know about their ostomy, they may think twice about bringing it up or making jokes about it. While they’re relatively private about it in public, if you searched their names on google, you might find some reference to their activity in the ostomy world.
In The Closet (And Not Planning to Leave)
This group of people lives a double life. They share about their ostomy on a need to know basis. Sometimes this means only their significant other and doctors. In other cases, they choose to share with their family and closest friends but no one else. Some people hide it from their kids and many from their employers. These people might be a part of private online support groups or they might keep everything to themselves.
Being that we were at an ostomy conference, everyone was open about their ostomy. For some of the people who identify as being “in the closet” this environment was like a weight coming off their shoulders. A secret they had been holding in and guarding so vehemently was finally being shared and you could visibly see how much they were enjoying 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 go first playing Cards Against Humanity if I wanted to, I didn’t have to think about who knew and who didn’t – 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. During recovery, it prevented me from participating in physical activities that I was anxious to participate in. 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 about their ostomies. After some really interesting conversations and a month of thinking about it on my own, I’ve identified another reason that I am 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). It was inspiring for some of my new friends to hear me talk candidly about my experience. We were equally intrigued by the dynamics of our intimate relationships. They were happy to hear about my positive experiences with sharing my story with strangers. I am proof that having an ostomy doesn’t have to hold you back, but if I keep that a secret, then no one will know and the stigmas will persist.
On World Ostomy Day, I posted a link to my blog about 45 things I’ve done with and ostomy onto my personal Facebook page. I was nervous about the response, but you know what? It was incredible. People I hadn’t spoken to in years commented on it in positive ways. It got lots of likes. I figured I’d done something right and had made a little progress toward spreading ostomy awareness. A few days later, a friend of mine messaged me to let me know that after she had shared my post on her page, a coworker of hers had seen it and sent it to her mother-in-law who had recently had ostomy surgery. She told me that her coworker’s mother-in-law had been inspired to stop being down on herself. She had realized that there were other people who had gone through similar struggles and found happiness and decided she should too. Reading this message, I felt ecstatic. The impact my blog post had on a complete stranger perfectly embodied why I am out of the closet.
When I began building this website, my goal was cliche. It was to help at least one person have the information to more easily deal with their ostomy adventure. I met that goal early on and it felt great. Being able to positively impact one person is amazing, however it is not enough, so now my goal is shifting. I don’t want to help just one person. I want to help many people. I want to be a part of the change in the stigma toward ostomies. I want people to know what an ostomy is and why it’s important that ostomates have access to the medical supplies and doctors we need in order to maintain quality of life. That’s why I’m out of the closet.