By Hannah Martin-Spencer, BKin, Ostomy Canada Marketing Team

Getting comfortable and confident with your ostomy doesn’t just happen overnight. Many people struggle with how or when to tell people about their ostomy. It is completely normal to be unsure and I think it is something you slowly build on over time.

I was lucky enough that people in my family were already familiar with ulcerative colitis and knew what an ostomy was because my mom had a temporary one as a teenager. This made it easy to talk about with my family because I wasn’t the first one to go through it. But it was harder to tell friends because I was worried that they might make assumptions about me and my bag.

I started by telling 3 of my closest friends who I was going to be living with the following semester after my surgery. I explained how sick I had gotten and that I needed to have surgery to remove my large intestine, they asked lots of questions and I was able to explain about my ostomy and what it meant. They were very supportive and made me feel comfortable. For the first year or two they were the only ones besides my family that knew – then I realized that I was spending so much energy trying to keep it hidden at all times. So I started posting about my story and my bag on Instagram to help build my own confidence and to help break the stigmas surrounding ostomies. It was easier for me to talk about it on a screen than face to face with people I knew. Through that I started meeting friends with ostomies and it became second nature to talk about it. Telling people in person was still hard but it got easier the more I did it.

Some days I still find it hard to talk about it, but most of the time I am okay being open and honest about my ostomy and my lived experience with one – but it took a few years of hiding, a year of only talking about it online and another year of slowly letting myself talk about it more to more people. If you recently had surgery or might be having it soon – just know it is normal to feel worried and insecure, it is okay to not know how to tell people but the feeling won’t last forever. And if being confident in telling people is something important to you – consider my practical tips:

• Practice makes perfect, and if you are terrified of how people might react, start with one person. Maybe a close friend, a relative, or maybe you feel more comfortable telling a stranger. 

• Start small – maybe the first time you talk about it all you say is that you had to have surgery and are missing some organs, then the next time you say you have a medical device on your stomach from surgery, and then finally the next person you tell everything (or as much detail as you are comfortable with!). When in doubt, keep it simple and lighthearted.

• Speak with confidence (even if you are faking it!) because the more comfortable and confident you are talking about it, the fewer people will assume that your ostomy is negative.

• Try to focus on the positive things that having an ostomy has given you. Maybe before surgery you were in lots of pain or couldn’t leave the house much, but now your quality of life has improved. People will see your ostomy as something that has helped, not hindered you. 

• Practice talking about it with people who also have an ostomy. Maybe you post about it on a Facebook support group or join an in person support group and share your story. Every time you are able to talk about it you will feel better about telling people in your life. 

• Remember that every person has something they feel insecure about – you are not alone in feeling worried about how people may see you.

• Choose the right time and place – talk about it only when you are ready, and somewhere that you feel comfortable like your house. 

• Be honest about your feelings when you share. If you are feeling anxious about talking about it, it’s okay to say that. People will appreciate your vulnerability. 

One thing that I did to make talking about it easier was to show the bag more often when out in public. Sometimes I will wear low-rise jeans and let the top of my bag stick out while I’m out shopping, other times I wear a bikini to the beach that shows the whole bag. Letting people see me out and about in the world with my medical device has shown me that most people don’t notice or care, and the people who do notice are just curious. It has really helped me feel more comfortable and confident in having my ostomy in the first place which has made talking about it easier as well. In fact, I ended up meeting another lady with an ostomy while out for a hike the very first time I wore an outfit that showed my bag. I never would have met that lady if my bag wasn’t showing, because she stopped me, pointed, and said, “Oh, hey, I have one of those too!” This interaction also started a conversation about my ostomy with my boyfriend’s brother who was with us, who had no idea I had an ostomy prior to that. 

If you want to tell people about your ostomy, know that you can! It might be hard or a little awkward at first, but it will be okay. I hope that these tips and experiences encourage you to be brave and share your story – even if it’s with one person. 

Hannah Martin-Spencer, BKin, Ostomy Canada Marketing Team.

Disclaimer: The information shared by Ostomy Canada Society is for educational purposes only and is not a substitute for professional medical advice, diagnosis, or treatment. Every person’s ostomy experience is unique. Please consult your health care provider with any questions about your condition, care, or treatment plan.