Raising awareness about stomas: why is it so important? This blog might almost be like word vomit because there is so much to unpack! There are many reasons why it is important to raise awareness. Having an ostomy is life-altering. Some can be planned and you can be a little bit more prepared for it, some are emergency, and you have no idea you’ll have one until you wake up and it’s there. In my opinion, a bit like having a baby, however prepared you are… you can never really be ready for what’s to come!
Why Ostomy awareness is so important
Raising awareness can make other people feel a little bit less alone. Seeing other bodies online that are like yours and being around and talking to other ostomates can heal parts of you that you never even realised were broken.
And it’s not just about raising awareness for people with ostomies. You just don’t know who could need surgery, and having knowledge about what a stoma is can help if someone you know ends up needing one, so they don’t need to explain the basics. If someone you know says, “I am going to have a stoma” or “I’ve got a stoma”, it can be exhausting having to explain what it is time and time again. Having understanding people, with no judgement, is crucial in helping the person accept their new body.
One story that someone told me when I first started using social media to raise awareness has stuck with me. Someone I knew, whose mum has had a stoma since she was in Year 7 (25-odd years ago), kept it top secret. Nobody knew apart from immediate family.
It broke my heart.
I couldn’t imagine not only having to deal with having a stoma but also carrying it around like a heavy secret. You don’t have to shout it from the rooftops, but it isn’t something you should be ashamed of. Raising awareness can help those people who have been ashamed and embarrassed for years—sometimes their whole life—realise that they don’t need to be.
Sharing stoma experiences is so important
I have learnt so much from other people sharing their experiences. Whether it’s what appliances help with sore skin, how to start using a delivery company, which hydration sachets don’t taste like bowel prep, or what gives me confidence to do a “first” with a stoma, this has all come from conversations, talking openly. Raising awareness.
Starting the hard conversations. Showing that using a disabled toilet is OK when you have a stoma. It’s making people aware of “Can’t Wait” cards. It’s showing people you can still swim and go to the gym, you can still have a family, you can still go out for dinner, or weekends away. You can go on adventures and ride a bike. I can’t think of anything it has stopped me doing forever.
Well, other than pooing out of my bum!
It’s proving that you can still live and love your life. It’s showing the hardships that ostomates have to go through. It’s helping to remove the fear. It’s knowledge, and knowledge is power in all things.
It’s changing the narrative of “those things shouldn’t be talked about” to talking about them all the time. To not being afraid of going to the GP if something is wrong. It’s showing people that stoma life doesn’t mean no life. Far from it. It’s acknowledging that it’s tough, but it gets easier.
Raising awareness is so, so, so important.
- It’s important for the grandmothers who have had a stoma for years and not dared speak about it.
- It’s for the babies who have to have surgery within days of being born.
- It’s for the mothers of those babies. It’s for the men who have avoided going to the GP and now face living a different life to what they imagined.
- It’s for the 16-year-olds who wonder if they’ll ever feel normal again, if they will ever fall in love.
- It’s for the doctors, consultants, surgeons to see that we aren’t just a statistic, we are humans and have life-changing medical needs.
- It’s for the families of all those who have had or may need stoma surgery.
- It’s for the people banging on the disabled toilet door because “you don’t look like you should need to use that facility”.
- It’s for all the fashion brands to show that body shape isn’t the only thing to consider, and that body types matter too.
- But most importantly it’s for us. The people with stomas.
So, let’s keep talking about it, because that’s what it is really. Talking, understanding and showing that a stoma is a big part of you, but at the same time, just a small part of you too. Life with a stoma DOES NOT mean no life at all.
It means to live it a little bit more.
