The Spoonie Mummy

So this week a friend of mine has had a poll running about the use of the word ‘stigma’ when people are talking about their ostomies online.

His position – that people are using this as a hook, for views, to get attention on their posts. His problem with this is that anyone who may be facing surgery and seeing these types of post will be terrified about what they are going to face post-op. And I have to say it – I agree!

Read more: Stoma Stigma… is it real or just a good social media hook?

Stigma

A set of negative and often unfair beliefs or labels that society or a group of people attach to something. It frequently leads to shame, social isolation and discrimination, discouraging people from seeking help or living openly.

Research suggests that stigma is influenced as much by how people think others will react as by actual reactions.

I think these days stigma is the wrong word to use. I know historically, there was a huge stigma attached to ostomies. I have a friend who has had his ostomy for well over 40 years and was told as a child not to tell or show anyone at all costs.

But we have definitely moved on. With the help of things like the Get Your Belly Out campaign, as well as ‘celebrity’ ostomates sharing their stories more widely, people know much more about them now.

Before I started my relationship with Tom, I was giving dating apps a go. I chatted to a few people and went on a few dates. And whenever I bought it up, it was never an issue! The number of people who actually said “oh yeah I know someone with one of those” surprised me too!

Now, this does not mean there are not still misconceptions, misinformation or the odd troll out there. Hence, why I started this blog – I wanted to share the realities about living with an ostomy as well as the other chronic illnesses I have. I want to help educate and show how life can still be productive, happy, meaningful… because it really can! And when occasionally there is something negative – a misjudged comment, a misinformed judgement made, we can tackle it straight away..

Continuing to use the word stigma for it’s potency in being able to hook a social media audience, is doing a disservice to all those who have worked so hard in the last 10+ years especially to stop this. And even worse it may be scaring those facing surgery or who have just had it and are looking for support and comfort and instead being bombarded with how people are going to see them and what they will think about them moving forward.

Social media is a game and people often get told to post X amount of times a day, use these keywords to get your post more traction, use a controversial hook… but when these posts could be scaring people and spreading misinformation we need to be really careful. Ostomies are not a game and if you really want to make a difference to this community you need to make sure you are doing it the right way.

What do you think about the word stigma still being attached to having an ostomy? Do you think there is still a stigma attached to having an ostomy? I would love to hear your thoughts in the comments below!