It feels like it was only yesterday that my Instagram feed was glittered with beautiful photos of ostomates across the world, showing what World Ostomy Day means to them. For most of us who use the platform to document their journey living with an ostomy, its a daily occurrence, yet what is it about World Ostomy Day that makes it that much more special? I’ll share with you what it means to me. It means seeing everyone the same as me, rocking their bag, being raw and relatable, sharing the positives and the negatives. I feel seen. I feel my five year old ostomate is seen. That is the power of this day. It doesn’t make the content shared less valid the rest of the year, but it does make it feel like as a community, we are united and we are fighting this journey together.
The day is primarily used to focus on being stoma aware and sharing experiences, positive and negative, to inform and educate the public. I have had the honour of being involved in such a campaign where new signage was been rolled out starting in the capital of Wales, Cardiff back in Summer 2021. It represents the 92% of disabled people living with an invisible illness. The wheelchair symbol that we all know and recognise is valid for wheel chair users and rightly so. Nevertheless, lack of anything else is discriminative against those of us that need to use disabled facilities, yet on the outside may appear not to need them at all.
I myself have faced such discrimination, thankfully not to the degree of some for which I am truly thankful for. I have been challenged in a well known supermarket being told that I should use the ladies toilet with my then 3 year old ostomate when needing the disabled toilets to attend to our ileostomies with urgency. This is similar to another three incidences which have occurred this year which just isn’t acceptable, especially in front of an impressionable ostomate taking it all in.
Social media has become such an important tool in the lead up and recovery of surgery for many in the community when ‘ostomy’ is a new word they didn’t have the need to know before hand. In a situation where you don’t want to respond to such discrimination, social media has become a space to share your bad experiences and gain comfort and solidarity from those that have experienced it all too well. I have made sure if it has happened in a retail environment that I have quietly and confidently told the manager that I do not appreciate the treatment given by a member of staff and asked if they had stoma awareness training. Did you know companies do this? In retail, travel and hospitality just to name a few, stoma awareness training can be accessed to inform staff of what a stoma is, why it may be needed and what facilities an ostomate might need. In an ideal world this would be happening everywhere so ostomates weren’t put in awful situations at airports and theme parks like those that have been documented in the news previously.
One things for sure. Whatever walk in life you take, whatever cards you are dealt with, it’s more common than not to have struggled or had a disagreement. It is how you deal with it and who you have around you to support you that will see you through. Having an ostomy isn’t common and unless the reason has been genetically passed down like in my family, you are likely to be the only one in your household. That is why today of all days, I give a heart felt thanks to my fellow ostomates for the support and kindness they have shown me over the past year. I hope whatever you do on this day you know that having an ostomy is special. I truly believe we are only given what we can handle, and if you are given one, then you are strong, courageous and brave.
Until next time, Rach x