Why stoma awareness matters | by Rachel
It’s easy to jump to conclusions and believe the myths out there. We worry that we are going to smell, that our bags are going to fall off all the time, or that our life as we know it is over. Then come all the questions: will I ever swim again? Can I still go to the gym? What about going for a run? I remember wondering if I would wear the clothes I loved again or if my stoma would stop me doing the things that made me feel like me.
Our minds have a funny way of focusing on everything we think we can’t do, instead of everything we still can. Fear has a habit of doing that. But what helps to combat fear? Knowledge. The more we normalise living with a stoma and talk openly about what life really looks like, the more we break down those misconceptions. A stoma is simply another way to poo, another exit, a different way of doing things.
How awareness can improve confidence and wellbeing for people with a stoma
I used to dread people asking questions about my stoma, not because I was embarrassed, but because I never quite knew how much explaining I was going to have to do. The more awareness there is, the less those conversations have to start from scratch. Thankfully, stomas are being talked about more through the media, and that can make it much easier for people who are finding the courage to tell friends, family or colleagues about theirs.
Let’s be honest, poo is still a taboo topic, and I don’t think that is going to change overnight. But every conversation, every campaign and every person who shares their story helps to make life with a stoma feel that little bit more normal. For many people, having a stoma relieves years of pain, illness and a life that wasn’t being lived to the full. I expected my stoma to change how people saw me. I didn’t expect it to change how I saw myself.
I thought accepting my stoma would be the biggest challenge, but what I didn’t see coming was the confidence it would give me. I have never felt more like myself or more able to stand tall in a room and know I have every right to be there. My stoma gave me something I hadn’t felt in a very long time: peace. It took away the pain that had dominated my daily life and gave me the chance to start living again instead of simply getting through each day.
Ways individuals can help raise awareness
This is where you need to stay true to yourself and not give in to the pressures of modern society. Sharing our lives has become the norm. It is how many people process trauma, connect with others, heal and make sense of what has happened to them. But it doesn’t have to be the only way. If sharing your story publicly doesn’t feel like you, there are other avenues you can take.
Finding a local support group, attending meetings and connecting with fellow ostomates can be just as powerful. Your stoma nurse or support organisations can help point you in the right direction. There are also lots of ways to get involved from the comfort of your own home, whether that is learning more, joining campaigns or connecting with the wider community. Sometimes simply knowing you are not alone can make the biggest difference.
Awareness doesn’t require everyone to share every detail of their journey. Sometimes awareness is simply living openly, answering one question, or helping one person understand. Sharing your story with just one person – a colleague, your workplace or your child’s school, helps to normalise stomas in society. It takes great courage to be open and honest about something that can carry such an emotional weight, and every person who chooses to share helps make the next person’s journey a little easier.
Children living with a stoma today are growing up in a world where stomas are being seen, talked about and understood. The contrast to what their great-great-grandparents would have experienced couldn’t be more different. Babies who get their first stoma today will hopefully grow up knowing they are not different, they are not limited, and they never have to hide who they are. That is the power of awareness. It isn’t about everyone sharing their story with the world; it is about creating a world where the next person feels a little less alone.
Finally…
Living with a stoma is not always the journey we expected, but it can still be a life full of confidence, connection and opportunity. Just one conversation is how it starts. Awareness helps to break down the myths, removes some of the fear and allows people to see the person beyond the stoma. Your stoma is a very small part of you. We didn’t choose the path that brought us here, but we can help make the journey a little easier for the people walking it after us. I can’t help but think of my own mini ostomate. Everything I do is for him.
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