To share or not to share – the big bag reveal!

When I first had a stoma I felt overwhelmed and the idea of sharing with others what I was going felt too much. I felt too vulnerable. I was still trying to get my head around all my own feelings and having to deal with the practical day to day stuff too. And because talking about my colostomy bag would involve talking about body parts and poo it all felt far from any ‘normal’ conversation I was wanting to have.

I recently listened to a Brene Brown podcast in which she was interviewing two other podcasters. They talked about how they had each decided how much personal stuff to share on their podcasts. Brene said that when it comes to sharing vulnerable stuff everyone
has their own line but for her, her bottom line is, “if my healing is dependent on your response, I’m not ready to hear it.” 

That really spoke to me. There were definitely times in the early days of having my stoma that I couldn’t bring myself to tell people; it felt
like a part of my life I wanted to hide from the world because I couldn’t quite accept it myself. Other times I found myself telling people I wasn’t even close to and then I regretted it; I felt I had trusted the wrong people, used it to make a connection when I wasn’t feeling too
comfortable, or shared it as a means of justifying my actions.

In hindsight I was still very much in my own healing process. 

In my own time, it has helped telling people, but it can be hard to put into words what it really feels like to live with a stoma. However, being in contact with those who have a bag – now that is what I really craved and still treasure so much.

When I first came out of hospital with an emergency stoma, a friend put me in touch with her cousin – a complete stranger to me BUT she had a stoma too! She was older than me, our life styles were so different (she was a doctor in the US that went on cruises!) but I could have wept at how wonderful it was to talk to someone with a bag.

I was living abroad and there were no stoma nurses or support groups where I was. It was pretty isolating. Facebook groups became my salvation (not sure Insta existed back then!) for all the practical tips and in time Tapping, Matrix and other tools I now share with clients, helped me feel calmer, content and more confident.

Interestingly, when I went back to work (in a new role) I didn’t tell anyone. It was like I had to start the big reveal all over again. This happens on our road to recovery sometimes. We move forward little by little, sometimes in leaps and bounds, and then we shuffle back or regress, we stagnate, recalibrate and off we go again! When I moved to my next place of work I told my manager from the start. Slowly I told some of my colleagues too. People were always kind, often they didn’t know what I was talking about or what to say but it felt like a big relief just to say it out loud. I didn’t want my bag to define me but it is part of who I am now and there are days when my bag change trumps all!

Fast forward a few years and I’m happy to tell anyone about my bag but equally don’t feel like I have to, or owe anyone an explanation.

I love that I have created a space to give other women a chance to talk about all the shit (pun intended) that comes with having a stoma, and offer them a non- judgemental place that they can laugh and cry about it, ultimately healing mind and body so they can get on with living their lives, stoma, bag and all.  

I created Bags of Calm to provide a space for women pre- and post-surgery to come together, not to give each other medical advice, but to receive emotional support, so you feel safe to practice your big reveal or gently explore what is getting in your way of being your authentic self; stoma, bag & all.

Developing a self-compassion practice has taught me that it is ok to feel what we feel and to go at the pace that is right for us. It has also helped me to recognise we are never alone in our suffering, and the more we name what we find the hardest the more we heal from it. 

But take your time, make sure you are sharing for YOUR benefit and yours alone. You may want to ask yourself does sharing about my bag empower or disempower me. It’s a nice way to reflect on what you are actually getting out of telling others. And for those who shared from day one – good for you! It would be great to hear how you tell people about your bag – it may just help someone else along the way.

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